https://www.porphyria.org/features daily 0.75 2026-03-29 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/bbe5a1f4-d4a3-4b8d-bee7-d6f74b146fa0/porphyria+voices+%281%29.png https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/273c8395-01a3-4f9c-b252-4a885529c12f/WUD.png https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/c4066595-dea8-4f80-89f2-32fa4191b22a/Summing.png https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/d4d3cf2d-6957-4909-a255-3508ac06c484/Meet+your+experts.png https://www.porphyria.org/features/chooseyou monthly 0.5 2026-03-29 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/ab6a9809-84ff-4a11-8013-689e4e990cb8/porphyria+voices+.jpg Porphyria Spotlight - I Would Choose You, Every Time - Porphyria Voices shares experiences, insights, and advice from the porphyria community. Discover valuable knowledge, foster connections, and join us in raising awareness to empower and unite our porphyria family. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/92687612-4ce5-45d7-a4ac-e2bef1d068cb/image0.jpeg Porphyria Spotlight - I Would Choose You, Every Time - “Going into our marriage, I knew there would be struggles. Not just the typical marriage struggles, but the kind where I would stand by his side through every surgery, every pain, every blister, every sore.” -Holly, CEP Caregiver https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/e70cd6fc-238c-491b-b3a3-d26ee601e991/image0+%281%29.jpeg Porphyria Spotlight - I Would Choose You, Every Time - “It has also taught our children incredible kindness and compassion. They have learned how to help others by watching how they love and care for their dad.” https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/02add999-7e65-46c1-b416-02c9d951189b/image13.jpeg Porphyria Spotlight - I Would Choose You, Every Time - Make it stand out Holly, Justin and their family. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/b6598977-a1d5-496a-8f55-abd1aa069ec3/image21.jpg Porphyria Spotlight - I Would Choose You, Every Time - Holly and her husband, Justin, live in Nebraska with their family. You can follow their journey on Holly’s Instagram @holly.hamilton.17 https://www.porphyria.org/features/natestory monthly 0.5 2026-02-27 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/36e2c71d-b546-4bed-9090-5cc88fb71303/nate+story Porphyria Spotlight - Meet Nate, Histiocytosis (HLH) Warrior & Advocate - "I was misdiagnosed with Crohn’s disease for a total of three times" -Nate, HLH patient. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/bc48c471-7bc9-4b77-a7b1-6e7c4dfca8ea/nate+story+raredisease Porphyria Spotlight - Meet Nate, Histiocytosis (HLH) Warrior & Advocate - “For over a decade, I underwent 16 surgeries, including 13 in a span of 14 years, ultimately leading to the complete removal of my colon and a permanent ileostomy. ” -Nate, HLH patient. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/18224dfc-6f9b-44b6-928d-375fc1ec9cbf/nate+ambulance Porphyria Spotlight - Meet Nate, Histiocytosis (HLH) Warrior & Advocate Nate being transported to the hospital during a medical emergency. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/2a6fef22-0c1e-43ee-8ab9-782783dcda88/9FD4223E-45A3-42EA-8658-9DBC407EE9C5.jpeg Porphyria Spotlight - Meet Nate, Histiocytosis (HLH) Warrior & Advocate - Make it stand out Nate sharing his rare disease journey during a patient advocacy event. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/c57c1da8-0b2f-4869-9c85-5aca848231b1/IMG_6445.jpeg Porphyria Spotlight - Meet Nate, Histiocytosis (HLH) Warrior & Advocate - Make it stand out Nate in UPA’s offices, working as a Patient Advocacy Operations Coordinator. https://www.porphyria.org/features/wud2602 monthly 0.5 2026-02-25 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/8c185a3e-d64d-403f-b66d-d868883ea026/whats-up-doc.jpg Porphyria Spotlight - Genetic Testing Results: Variant of Uncertain Significance (VUS) & De Novo - What's UP Doc? Is a regular column where we feature a patient question along with a response from a member of the UPA Scientific Advisory Board. https://www.porphyria.org/features/porphyriaholidays monthly 0.5 2026-03-23 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/ab6a9809-84ff-4a11-8013-689e4e990cb8/porphyria+voices+.jpg Porphyria Spotlight - The Holidays Look Different When You Live With Porphyria - Porphyria Voices shares experiences, insights, and advice from the porphyria community. Discover valuable knowledge, foster connections, and join us in raising awareness to empower and unite our porphyria family. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/758cf8f5-ef1e-4595-9ff3-aed13bc8e8d0/Cookies.jpeg Porphyria Spotlight - The Holidays Look Different When You Live With Porphyria - “I enjoy cooking, making presents, and spending time with family; however, I am no longer able to find pleasure through all of the pain.” -Kalyn, AIP patient. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/54835dce-2302-426d-94e2-4c14c35bf88c/Christmas+tree.jpeg Porphyria Spotlight - The Holidays Look Different When You Live With Porphyria - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/81bebe70-e7d8-4eb9-b318-fe1a0bc15c66/christmas+mood Porphyria Spotlight - The Holidays Look Different When You Live With Porphyria - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/1d53206f-e64a-4579-ac6b-7d0caf7a5f56/vertical+posts+%285%29.png Porphyria Spotlight - The Holidays Look Different When You Live With Porphyria - Kalyn Shelton is a patient living with Acute Intermittent Porphyria (AIP) and a proud UPA Ambassador. Based in North Carolina, Kalyn was diagnosed at a young age due to a family history of porphyria. Through her writing and advocacy, Kalyn is passionate about raising awareness, supporting fellow patients, and helping healthcare professionals better understand all forms of porphyria. She is also the author of the book I’m Not Always Me, where she shares her lived experience with porphyria and the realities of life with a rare disease. https://www.porphyria.org/features/profile2511 monthly 0.5 2025-11-25 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/1d08eb5a-6418-47db-9a4d-03eae5bd6a3c/rebecca-karp.jpg Porphyria Spotlight - Meet Dr. Rebecca Karp Leaf, Porphyria Expert - “Patients help us do better research—you ask the questions that we need to answer!” -Dr. Rebecca Karp Leaf https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/d4d3cf2d-6957-4909-a255-3508ac06c484/Meet+your+experts.png Porphyria Spotlight - Meet Dr. Rebecca Karp Leaf, Porphyria Expert - Meet more of the experts and advocates changing the world for porphyria https://www.porphyria.org/features/wud2511 monthly 0.5 2025-11-25 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/8c185a3e-d64d-403f-b66d-d868883ea026/whats-up-doc.jpg Porphyria Spotlight - Contraception Recommendations for Acute Hepatic Porphyrias - What's UP Doc? Is a regular column where we feature a patient question along with a response from a member of the UPA Scientific Advisory Board. https://www.porphyria.org/features/guidtorecovery monthly 0.5 2025-12-19 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/ab6a9809-84ff-4a11-8013-689e4e990cb8/porphyria+voices+.jpg Porphyria Spotlight - Finding Strength in Small Steps: A Patient's Guide to Recovery from Paralysis - Porphyria Voices shares experiences, insights, and advice from the porphyria community. Discover valuable knowledge, foster connections, and join us in raising awareness to empower and unite our porphyria family. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/f5c7a359-6775-46ea-8f6b-b22cc9fc6f53/maria+paula+in+icu Porphyria Spotlight - Finding Strength in Small Steps: A Patient's Guide to Recovery from Paralysis - “Every day in the hospital, I wondered when it would end, when I could walk and do my things with the greatest ease.” -Maria Paula, AIP patient. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/e7bf6384-5f93-4d18-96d6-ddda42a49b67/maria+paula+physio Porphyria Spotlight - Finding Strength in Small Steps: A Patient's Guide to Recovery from Paralysis - Make it stand out Maria Paula doing physiotherapy. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/808efe5b-1734-4356-9dbe-e26f3441bd70/maria+paula+now Porphyria Spotlight - Finding Strength in Small Steps: A Patient's Guide to Recovery from Paralysis - Make it stand out Maria Paula, now, recovering. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/3568c07e-410f-4c51-bfb9-cf5ed13dab18/CleanShot+2025-10-31+at+17.11.11%402x.png Porphyria Spotlight - Finding Strength in Small Steps: A Patient's Guide to Recovery from Paralysis - Maria Paula Galvis is a resilient AIP patient and advocate from Colombia. After experiencing a severe porphyria attack that led to complete paralysis, she embarked on a challenging journey of recovery, rediscovering strength through small daily victories. Her powerful insights into rehabilitation—emphasizing patience, self-compassion, and celebrating progress—inspire others in the porphyria community to navigate their own paths with courage and hope. https://www.porphyria.org/features/rareartists2025 monthly 0.5 2026-02-13 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/1978e939-ef8c-4c7b-8f96-e274c91dced9/original-adf6a964-ba07-4f59-ba79-ff4907d030f7.jpg Porphyria Spotlight - Join UPA’s Patient Artist Team! - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.porphyria.org/features/aidaart monthly 0.5 2025-10-31 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/ab6a9809-84ff-4a11-8013-689e4e990cb8/porphyria+voices+.jpg Porphyria Spotlight - Aida's Art: Painting Through Porphyria with Strength and Purpose - Porphyria Voices shares experiences, insights, and advice from the porphyria community. Discover valuable knowledge, foster connections, and join us in raising awareness to empower and unite our porphyria family. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/a544d979-f53c-4999-89e4-7a11f2fee670/aida+with+painting Porphyria Spotlight - Aida's Art: Painting Through Porphyria with Strength and Purpose - “The Jack Sparrow portrait proved something to me: my hands, despite everything, can create incredible detail.” -Aida, CEP patient. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/a5b096da-c7f2-48ef-bf1a-81908735b43c/aida+painting+celebrities Porphyria Spotlight - Aida's Art: Painting Through Porphyria with Strength and Purpose - Make it stand out Aida painting her Jason Momoa portrait. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/185971d6-979a-4f17-9b60-de488ec253c9/IMG_6461.jpeg Porphyria Spotlight - Aida's Art: Painting Through Porphyria with Strength and Purpose - Make it stand out Aida’s portrait of Jason Momoa. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/80f92be4-8911-4ce7-aa57-0f38c22b7d31/Aida+Zamani Porphyria Spotlight - Aida's Art: Painting Through Porphyria with Strength and Purpose - Aida is a 26-year-old artist and advocate from Iran, living with Congenital Erythropoietic Porphyria (CEP). From a young age, she has used art as her voice and her sanctuary, transforming the challenges of a life spent in the shadows into powerful, detailed portraits that radiate resilience. Her work is not just a creative outlet, but a testament to her unwavering spirit and a message of hope to others living with chronic illness around the world. https://www.porphyria.org/features/seanuniversalstudios monthly 0.5 2025-09-16 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/ab6a9809-84ff-4a11-8013-689e4e990cb8/porphyria+voices+.jpg Porphyria Spotlight - Theme Parks and Porphyria: Sean’s Story of Flexibility, Fun, and Flare-Ups at Universal - Porphyria Voices shares experiences, insights, and advice from the porphyria community. Discover valuable knowledge, foster connections, and join us in raising awareness to empower and unite our porphyria family. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/42abf714-e556-41c1-8018-88dfcdd25e18/WhatsApp+Image+2025-08-20+at+22.32.25+%281%29.jpeg Porphyria Spotlight - Theme Parks and Porphyria: Sean’s Story of Flexibility, Fun, and Flare-Ups at Universal - “Living life with porphyria requires balance between living life and taking care when porphyria flares up.” -Sean Albright, VP patient. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/89e2ad3c-e422-479d-b3d4-56f36359bd80/Sean+in+Universal Porphyria Spotlight - Theme Parks and Porphyria: Sean’s Story of Flexibility, Fun, and Flare-Ups at Universal - Make it stand out Sean avoiding the sun at Universal. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/b05f2cda-1048-41d8-a64d-d7a98c9a4911/Sean+and+Melissa Porphyria Spotlight - Theme Parks and Porphyria: Sean’s Story of Flexibility, Fun, and Flare-Ups at Universal - Make it stand out Sean having a porphyria attack, while Melissa supports him. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/48a56c24-fa3f-4f1e-9f19-dd4e31966710/sean+bathroom Porphyria Spotlight - Theme Parks and Porphyria: Sean’s Story of Flexibility, Fun, and Flare-Ups at Universal - Make it stand out Sean feeling better. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/13a8b271-c7d5-4e90-9421-c7ca96977e6b/Sean+Albright Porphyria Spotlight - Theme Parks and Porphyria: Sean’s Story of Flexibility, Fun, and Flare-Ups at Universal - Sean’s journey with variegate porphyria is one of resilience and hope. Despite the challenges of his condition, he’s found purpose, built meaningful friendships, and discovered passions like online car racing. Always eager to support the United Porphyrias Association, Sean is committed to raising awareness and inspiring others with porphyria to stay positive and create their own paths to happiness. https://www.porphyria.org/features/sumup15 monthly 0.5 2025-08-20 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/e5ac64e4-1c5b-4840-b411-6e632e7ad9f5/Sum+UP+logo+%281%29.jpg Porphyria Spotlight - The burden of EPP: Putting numbers to the realities of daily life - Summing UP features the latest porphyria research in easy-to-understand summaries that have been reviewed and approved by the UPA's Scientific Advisory Board of porphyria experts. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/fbe08fd8-e668-4083-9fa2-74526729aadc/scientific_advisory_board.png Porphyria Spotlight - The burden of EPP: Putting numbers to the realities of daily life - CONTENT REVIEWED BY UNITED PORPHYRIAS ASSOCIATION SCIENTIFIC ADVISORY BOARD https://www.porphyria.org/features/porphyriavacation monthly 0.5 2025-06-26 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/ab6a9809-84ff-4a11-8013-689e4e990cb8/porphyria+voices+.jpg Porphyria Spotlight - Safe Summer Travel with Cutaneous Porphyria: Sun-Avoidance Strategies That Work - Porphyria Voices shares experiences, insights, and advice from the porphyria community. Discover valuable knowledge, foster connections, and join us in raising awareness to empower and unite our porphyria family. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/279e8ff8-a30b-43cc-bda9-a1391586ff82/cutaneous+porphyria Porphyria Spotlight - Safe Summer Travel with Cutaneous Porphyria: Sun-Avoidance Strategies That Work - “My family has enjoyed camping in the deep woods. My husband would still string up tarps to give me more shade.” -Jennifer Beck, EPP patient. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/7bc5d1d9-af0f-4d8a-9dae-7f2aa634e4d0/sun+protection Porphyria Spotlight - Safe Summer Travel with Cutaneous Porphyria: Sun-Avoidance Strategies That Work Erin Janiak on vacation with her umbrella protecting herself from the sun. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/7255359c-f17c-4563-ac00-4cecbbbcac39/f50ae25c-ec39-4e0c-9285-a742e962bac2.jpg Porphyria Spotlight - Safe Summer Travel with Cutaneous Porphyria: Sun-Avoidance Strategies That Work - Make it stand out Patient with cutaneous porphyria wearing protective clothing at Sun Escape Weekend. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/e47e2193-791f-472e-96e4-8e2154a1681e/Copy+of+blog+covers.png Porphyria Spotlight - Safe Summer Travel with Cutaneous Porphyria: Sun-Avoidance Strategies That Work - Katrina Parra is the Director of Community Engagement at the United Porphyrias Association. Living with Acute Intermittent Porphyria herself, Katrina is dedicated to raising awareness and providing support for those affected by rare diseases. Through her work, she strives to build strong connections within the porphyria community, sharing her personal experiences and empowering others to navigate their journey with strength and solidarity. https://www.porphyria.org/features/sumup14 monthly 0.5 2025-08-20 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/e5ac64e4-1c5b-4840-b411-6e632e7ad9f5/Sum+UP+logo+%281%29.jpg Porphyria Spotlight - What Family Members of AHP Patients Should Know: High Levels, No Symptoms - Summing UP features the latest porphyria research in easy-to-understand summaries that have been reviewed and approved by the UPA's Scientific Advisory Board of porphyria experts. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/fbe08fd8-e668-4083-9fa2-74526729aadc/scientific_advisory_board.png Porphyria Spotlight - What Family Members of AHP Patients Should Know: High Levels, No Symptoms - CONTENT REVIEWED BY UNITED PORPHYRIAS ASSOCIATION SCIENTIFIC ADVISORY BOARD https://www.porphyria.org/features/whenacoladesfade monthly 0.5 2025-08-22 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/ab6a9809-84ff-4a11-8013-689e4e990cb8/porphyria+voices+.jpg Porphyria Spotlight - When Accolades Fade: Discovering True Worth Through Porphyria - Porphyria Voices shares experiences, insights, and advice from the porphyria community. Discover valuable knowledge, foster connections, and join us in raising awareness to empower and unite our porphyria family. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/7cf5f9df-1c76-4c10-b0af-cd76c29dc2c8/IMG_1564.jpeg Porphyria Spotlight - When Accolades Fade: Discovering True Worth Through Porphyria - “This disease may change what you can do, but it does not change who you are.” -Mayra Martínez, AIP patient. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/02b626c3-be6e-44bb-a364-77999ab15a01/IMG_5536.jpg Porphyria Spotlight - When Accolades Fade: Discovering True Worth Through Porphyria - Make it stand out Mayra at the hospital. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/18c8fe55-07b5-4f03-aee5-c3a5fb15e325/church+community Porphyria Spotlight - When Accolades Fade: Discovering True Worth Through Porphyria - Make it stand out Mayra’s friends in The Miracles Church (San Diego) wearing purple for Global Porphyria Day. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/731aa483-6508-4a2c-b3f2-8c6945874f56/porphyria+palooza Porphyria Spotlight - When Accolades Fade: Discovering True Worth Through Porphyria - Make it stand out Mayra and porphyria friends at the Porphyria Palooza 2024. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/61d31e9e-e710-4026-9bdf-9fdcd4fc0e02/Mayra+Martinez Porphyria Spotlight - When Accolades Fade: Discovering True Worth Through Porphyria - After a series of misdiagnoses and a life-threatening experience, Mayra was diagnosed with AIP in 2021. Despite the immense challenges, she chose to fight for her life. Today, she is not only recovering but also enjoys being a Porphyria Advocate with the UPA. She enjoys connecting with others living with porphyria. Her resilience continues to inspire others as she spreads awareness and support. https://www.porphyria.org/features/springporphyria monthly 0.5 2025-05-21 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/ab6a9809-84ff-4a11-8013-689e4e990cb8/porphyria+voices+.jpg Porphyria Spotlight - Spring Sun Safety: Essential Sun Protection Tips for Cutaneous Porphyria Patients - Porphyria Voices shares experiences, insights, and advice from the porphyria community. Discover valuable knowledge, foster connections, and join us in raising awareness to empower and unite our porphyria family. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/514b2eff-1b6f-4e95-a0a2-a77ef641a7c4/sun+protection Porphyria Spotlight - Spring Sun Safety: Essential Sun Protection Tips for Cutaneous Porphyria Patients - “I love the Shadow rule. I have never heard of it and it’s a great visual tool for kids! I will definitely be sharing that tip.” -Ginger Zona, EPP patient. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/d19cb136-1308-4ced-94b0-a7a35e6fb4d3/shadow+rule Porphyria Spotlight - Spring Sun Safety: Essential Sun Protection Tips for Cutaneous Porphyria Patients Use the Shadow Rule for a quick check on sun strength. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/1d77d615-4980-4edc-be4b-41c698227f34/d1c8078a-8c40-44f9-af23-1b01f74c2d24.jpg Porphyria Spotlight - Spring Sun Safety: Essential Sun Protection Tips for Cutaneous Porphyria Patients - Make it stand out Craig Leppert of Shadow Jumpers playing baseball with children living with cutaneous porphyrias at Sun Escape 2024. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/1740429876099-ISH6PYAUX9S9CPW67940/Light+Protection.jpg Porphyria Spotlight - Spring Sun Safety: Essential Sun Protection Tips for Cutaneous Porphyria Patients - Check out the recording from a recent webinar with Dr. Amy Dickey and EPP patient Ginger on light protection and porphyria. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/e47e2193-791f-472e-96e4-8e2154a1681e/Copy+of+blog+covers.png Porphyria Spotlight - Spring Sun Safety: Essential Sun Protection Tips for Cutaneous Porphyria Patients - Katrina Parra is the Director of Community Engagement at the United Porphyrias Association. Living with Acute Intermittent Porphyria herself, Katrina is dedicated to raising awareness and providing support for those affected by rare diseases. Through her work, she strives to build strong connections within the porphyria community, sharing her personal experiences and empowering others to navigate their journey with strength and solidarity. https://www.porphyria.org/features/sumup13 monthly 0.5 2025-06-25 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/e5ac64e4-1c5b-4840-b411-6e632e7ad9f5/Sum+UP+logo+%281%29.jpg Porphyria Spotlight - Living with EPP and Liver Disease: What We Learned from Patients - Summing UP features the latest porphyria research in easy-to-understand summaries that have been reviewed and approved by the UPA's Scientific Advisory Board of porphyria experts. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/fbe08fd8-e668-4083-9fa2-74526729aadc/scientific_advisory_board.png Porphyria Spotlight - Living with EPP and Liver Disease: What We Learned from Patients - CONTENT REVIEWED BY UNITED PORPHYRIAS ASSOCIATION SCIENTIFIC ADVISORY BOARD https://www.porphyria.org/features/sun-escape2025 monthly 0.5 2025-04-24 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/f2c964ef-e3ad-4673-a69c-88b599f4d1ba/Victory+Junction+PR.png Porphyria Spotlight - Promise of ‘All Fun and No Sun’ Gives Photosensitive Children the Chance to Enjoy Camp Experiences  - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.porphyria.org/features/wud2504 monthly 0.5 2025-04-23 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/8c185a3e-d64d-403f-b66d-d868883ea026/whats-up-doc.jpg Porphyria Spotlight - Recommendations for Hemin Preparation and Infusion - What's UP Doc? Is a regular column where we feature a patient question along with a response from a member of the UPA Scientific Advisory Board. https://www.porphyria.org/features/profile2504 monthly 0.5 2025-11-24 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/6bd6e61a-a40e-406f-a74f-4a86a90f781a/Rebeiz%2C+Lina_Photo.jpeg Porphyria Spotlight - Meet Lina Rebeiz, Porphyria Community Builder - "I think coming to events, if you’re able to travel, is one of the best things you can do. Things are so different once you actually meet other patients with porphyria." -Lina Rebeiz https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/d4d3cf2d-6957-4909-a255-3508ac06c484/Meet+your+experts.png Porphyria Spotlight - Meet Lina Rebeiz, Porphyria Community Builder - Meet more of the experts and advocates changing the world for porphyria https://www.porphyria.org/features/wud2502 monthly 0.5 2025-03-12 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/8c185a3e-d64d-403f-b66d-d868883ea026/whats-up-doc.jpg Porphyria Spotlight - Porphyrins and Fluorescence - What's UP Doc? Is a regular column where we feature a patient question along with a response from a member of the UPA Scientific Advisory Board. https://www.porphyria.org/features/livingintheshadows monthly 0.5 2025-03-20 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/ab6a9809-84ff-4a11-8013-689e4e990cb8/porphyria+voices+.jpg Porphyria Spotlight - Living in the Shadows: Elsie’s Journey with Congenital Erythropoietic Porphyria - Porphyria Voices shares experiences, insights, and advice from the porphyria community. Discover valuable knowledge, foster connections, and join us in raising awareness to empower and unite our porphyria family. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/7ec28633-776d-4c98-8ab1-7a651e50fba1/Elsie+CEP.jpeg Porphyria Spotlight - Living in the Shadows: Elsie’s Journey with Congenital Erythropoietic Porphyria - “I’ve accepted that my relationship with the sun is best described as ‘long-distance, and we don’t talk much’.” -Elsie Pultz, CEP patient. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/70dd793b-a302-4791-9858-0fd24189b37b/Elsie+CEP.jpeg Porphyria Spotlight - Living in the Shadows: Elsie’s Journey with Congenital Erythropoietic Porphyria - Elsie is a resilient individual living with congenital erythropoietic porphyria (CEP). Diagnosed in the 90s, her journey has been filled with challenges. Despite the physical limitations of CEP, Elsie has turned to creative hobbies like fencing, showing strength and determination in embracing life on her own terms. https://www.porphyria.org/features/apex-testing monthly 0.5 2025-04-24 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/5f582a2b-0ac7-4b83-a9cd-994ec0ca4049/APEX+2_3.jpg Porphyria Spotlight - Statement from the American Porphyria Expert Collaborative - The American Porphyrias Expert Collaborative facilitates best practices in the diagnosis, management and treatment of the eight major porphyrias and their variants by facilitating, and coordinating expert activities in the United States and by developing collaborative arrangements with expert porphyria groups worldwide. https://www.porphyria.org/features/jasminecaregiver monthly 0.5 2025-02-17 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/ab6a9809-84ff-4a11-8013-689e4e990cb8/porphyria+voices+.jpg Porphyria Spotlight - Understanding the Emotional Toll of Being a Caregiver for a Loved One with Porphyria - Porphyria Voices shares experiences, insights, and advice from the porphyria community. Discover valuable knowledge, foster connections, and join us in raising awareness to empower and unite our porphyria family. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/27eb1c9d-481f-43b4-8ea2-82803c95ca0d/5b8eb3d7-55f0-4e0c-8053-cb0f77026c44.JPG Porphyria Spotlight - Understanding the Emotional Toll of Being a Caregiver for a Loved One with Porphyria - “Watching her transform from a strong, spirited woman to someone lying on a hospital bed was a pain I couldn’t have prepared for.” -Jasmine Martínez, Caregiver of AIP patient. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/e23d6348-c655-4e4c-b7d8-cf96c7e0f2e8/7cb5f0fd-976b-4b4d-bbcb-b64b243143c9.jpg Porphyria Spotlight - Understanding the Emotional Toll of Being a Caregiver for a Loved One with Porphyria Jasmine, her mother, Mayra, and her sister, Michelle. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/caba8c87-fbc2-4574-a4a2-c5436d52a07f/Jasmine+Caregiver Porphyria Spotlight - Understanding the Emotional Toll of Being a Caregiver for a Loved One with Porphyria - Jasmine Martinez is a caregiver for her mother with acute intermittent porphyria. Caregiving for someone with a rare condition like porphyria involves understanding the unique challenges and pain that can come with the disease. Caregivers like Jasmine provide emotional, physical, and practical support, often helping with medical care, lifestyle management, and emotional well-being. https://www.porphyria.org/features/profile2501 monthly 0.5 2025-04-23 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/ea4d487a-5624-466c-8287-3d676e9b3336/Desnick.jpg Porphyria Spotlight - Meet Dr. Robert Desnick, Porphyria Expert - "The Porphyrias Consortium allowed us to train the next generation of porphyria experts. We’ve worked so well together to carry out basic and clinical research, including multiple clinical treatment trials, that we wanted to continue our excellent collaborations and research." -Robert Desnick, MD, PhD https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/d4d3cf2d-6957-4909-a255-3508ac06c484/Meet+your+experts.png Porphyria Spotlight - Meet Dr. Robert Desnick, Porphyria Expert - Meet more of the experts and advocates changing the world for porphyria https://www.porphyria.org/features/voices2501-dy3cx monthly 0.5 2025-06-10 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/ab6a9809-84ff-4a11-8013-689e4e990cb8/porphyria+voices+.jpg Porphyria Spotlight - How Positive Experiences Can Exacerbate Acute Porphyria: Managing Stress and Symptoms - Porphyria Voices shares experiences, insights, and advice from the porphyria community. Discover valuable knowledge, foster connections, and join us in raising awareness to empower and unite our porphyria family. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/e00b6045-8cf7-4c05-a2e4-e431c68023cd/WhatsApp+Image+2025-01-07+at+17.33.48.jpeg Porphyria Spotlight - How Positive Experiences Can Exacerbate Acute Porphyria: Managing Stress and Symptoms - “Even too much fun can overwhelm our bodies. So therefore, I encourage you to make wise trade-offs but KEEP LIVING.” -Mayra Martínez, AIP patient. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/20ec2f98-b75f-4292-802e-388d2a852acb/Mayra%27s+wedding Porphyria Spotlight - How Positive Experiences Can Exacerbate Acute Porphyria: Managing Stress and Symptoms - Make it stand out Mayra and her family. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/ffeb447a-95bc-4a4f-9ba5-f97fca5483b9/hospital+botox Porphyria Spotlight - How Positive Experiences Can Exacerbate Acute Porphyria: Managing Stress and Symptoms - Make it stand out Mayra at the hospital receiving Botox for migraines. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/61d31e9e-e710-4026-9bdf-9fdcd4fc0e02/Mayra+Martinez Porphyria Spotlight - How Positive Experiences Can Exacerbate Acute Porphyria: Managing Stress and Symptoms - After a series of misdiagnoses and a life-threatening experience, Mayra was diagnosed with AIP in 2021. Despite the immense challenges, she chose to fight for her life. Today, she is not only recovering but also enjoys being a Porphyria Advocate with the UPA. She enjoys connecting with others living with porphyria. Her resilience continues to inspire others as she spreads awareness and support. https://www.porphyria.org/features/wud2501 monthly 0.5 2025-01-23 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/8c185a3e-d64d-403f-b66d-d868883ea026/whats-up-doc.jpg Porphyria Spotlight - Treatments for Congenital Erythropoietic Porphyria - What's UP Doc? Is a regular column where we feature a patient question along with a response from a member of the UPA Scientific Advisory Board. https://www.porphyria.org/features/voices2501 monthly 0.5 2025-01-07 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/ab6a9809-84ff-4a11-8013-689e4e990cb8/porphyria+voices+.jpg Porphyria Spotlight - Living with Erythropoietic Protoporphyria (EPP): A Personal Journey   - Porphyria Voices shares experiences, insights, and advice from the porphyria community. Discover valuable knowledge, foster connections, and join us in raising awareness to empower and unite our porphyria family. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/10a764ce-e849-412a-b430-f07b1110b203/IMG_4193.jpeg Porphyria Spotlight - Living with Erythropoietic Protoporphyria (EPP): A Personal Journey   - “Now, I wash windows on sunny days and walk with my friends any time they ask thanks to treatment!” -Candace Colbert, EPP patient. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/6ea428a8-7c73-4d5d-9708-f5d48693be6a/Candace.jpg Porphyria Spotlight - Living with Erythropoietic Protoporphyria (EPP): A Personal Journey   - After all her life living hidden away and avoiding the sun, Candace was finally diagnosed with EPP in 2017. The path to the correct diagnosis required a great deal of self advocacy and patience. She has become a passionate community builder and advocate for the porphyria community. She is a UPA Ambassador and a true warrior. https://www.porphyria.org/features/voices2401 monthly 0.5 2024-12-18 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/1e220562-0461-425a-bc6f-b68a0f234f81/porphyria+voices+.png Porphyria Spotlight - Take Care and Celebrate: Adapting the Holidays to My Porphyria - Porphyria Voices shares experiences, insights, and advice from the porphyria community. Discover valuable knowledge, foster connections, and join us in raising awareness to empower and unite our porphyria family. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/f208ab8e-f48f-484b-8089-71620c9e4026/Healthy+Holidays.jpg Porphyria Spotlight - Take Care and Celebrate: Adapting the Holidays to My Porphyria - “Remember, whatever you choose to do or not do this holiday season, it's important to take care of yourself." -Diana Escobar, AIP patient. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/477b4798-14ab-4c90-86ce-609f0c583ad9/Diana.jpeg Porphyria Spotlight - Take Care and Celebrate: Adapting the Holidays to My Porphyria - Diana was diagnosed with AIP in 2008. Something that at the time only represented darkness in her life, she now sees as one of her greatest sources of light and total gratitude. Working for others inspires her to keep moving forward. She has been a leader for Porphyria patients in Colombia, an ambassador for UPA, and the moderator for the Spanish ConnectUp meetings https://www.porphyria.org/features/profile2411 monthly 0.5 2025-02-27 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/57e411f7-a8ce-49cf-9203-feee9e362c83/Yasuda_headshot_11262024.jpg Porphyria Spotlight - Meet Dr. Makiko Yasuda, Porphyria Researcher - "One thing I love about science is you learn something, then new information comes up and it opens up a whole new set of questions." -Makiko Yasuda, MD, PhD https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/d4d3cf2d-6957-4909-a255-3508ac06c484/Meet+your+experts.png Porphyria Spotlight - Meet Dr. Makiko Yasuda, Porphyria Researcher - Meet more of the experts and advocates changing the world for porphyria https://www.porphyria.org/features/sumup12 monthly 0.5 2025-02-27 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/e5ac64e4-1c5b-4840-b411-6e632e7ad9f5/Sum+UP+logo+%281%29.jpg Porphyria Spotlight - Mental Health in the Porphyrias - Summing UP features the latest porphyria research in easy-to-understand summaries that have been reviewed and approved by the UPA's Scientific Advisory Board of porphyria experts. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/fbe08fd8-e668-4083-9fa2-74526729aadc/scientific_advisory_board.png Porphyria Spotlight - Mental Health in the Porphyrias - CONTENT REVIEWED BY UNITED PORPHYRIAS ASSOCIATION SCIENTIFIC ADVISORY BOARD https://www.porphyria.org/features/czi-announcement monthly 0.5 2025-02-27 https://www.porphyria.org/features/wud24071 monthly 0.5 2026-03-31 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/8c185a3e-d64d-403f-b66d-d868883ea026/whats-up-doc.jpg Porphyria Spotlight - Urine Porphyrins for Diagnosis - What's UP Doc? Is a regular column where we feature a patient question along with a response from a member of the UPA Scientific Advisory Board. https://www.porphyria.org/features/sumup11 monthly 0.5 2025-02-27 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/e5ac64e4-1c5b-4840-b411-6e632e7ad9f5/Sum+UP+logo+%281%29.jpg Porphyria Spotlight - Using AI to Diagnose Porphyria - Summing UP features the latest porphyria research in easy-to-understand summaries that have been reviewed and approved by the UPA's Scientific Advisory Board of porphyria experts. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/fbe08fd8-e668-4083-9fa2-74526729aadc/scientific_advisory_board.png Porphyria Spotlight - Using AI to Diagnose Porphyria - CONTENT REVIEWED BY UNITED PORPHYRIAS ASSOCIATION SCIENTIFIC ADVISORY BOARD https://www.porphyria.org/features/profile2407 monthly 0.5 2025-02-27 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/1ec03b9b-2751-46ed-bb22-4334feaa06ac/Anderson.png Porphyria Spotlight - Meet Dr. Karl Anderson - Everything you learn about the disease you learn from patients. -Dr. Karl Anderson https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/d4d3cf2d-6957-4909-a255-3508ac06c484/Meet+your+experts.png Porphyria Spotlight - Meet Dr. Karl Anderson - Meet more of the experts and advocates changing the world for porphyria https://www.porphyria.org/features/wud2406 monthly 0.5 2025-02-27 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/8c185a3e-d64d-403f-b66d-d868883ea026/whats-up-doc.jpg Porphyria Spotlight - Porphyria and Menopause - What's UP Doc? Is a regular column where we feature a patient question along with a response from a member of the UPA Scientific Advisory Board. https://www.porphyria.org/features/profile2405 monthly 0.5 2024-12-12 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/d2ebdae9-6d70-48de-9654-064beecb5ffb/IMG_0949.png Porphyria Spotlight - Meet Ariel Lager, UPA Director - A porphyria diagnosis was both an answer and a big question. -Ariel Lager https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/d4d3cf2d-6957-4909-a255-3508ac06c484/Meet+your+experts.png Porphyria Spotlight - Meet Ariel Lager, UPA Director - Meet more of the experts and advocates changing the world for porphyria https://www.porphyria.org/features/sumup10 monthly 0.5 2024-08-15 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/e5ac64e4-1c5b-4840-b411-6e632e7ad9f5/Sum+UP+logo+%281%29.jpg Porphyria Spotlight - The EPP Impact Questionnaire - Summing UP features the latest porphyria research in easy-to-understand summaries that have been reviewed and approved by the UPA's Scientific Advisory Board of porphyria experts. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/fbe08fd8-e668-4083-9fa2-74526729aadc/scientific_advisory_board.png Porphyria Spotlight - The EPP Impact Questionnaire - CONTENT REVIEWED BY UNITED PORPHYRIAS ASSOCIATION SCIENTIFIC ADVISORY BOARD https://www.porphyria.org/features/profile2404 monthly 0.5 2024-12-12 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/4ac36172-b8d5-4092-878d-daa7b33746bc/Leppert.jpg Porphyria Spotlight - Meet Craig Leppert, Shadow Jumpers Founder - I realized that my condition with the sun was either going to define my life or become a cool addition to the story of my life. -Craig Leppert https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/d4d3cf2d-6957-4909-a255-3508ac06c484/Meet+your+experts.png Porphyria Spotlight - Meet Craig Leppert, Shadow Jumpers Founder - Meet more of the experts and advocates changing the world for porphyria https://www.porphyria.org/features/sumup9 monthly 0.5 2024-08-23 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/e5ac64e4-1c5b-4840-b411-6e632e7ad9f5/Sum+UP+logo+%281%29.jpg Porphyria Spotlight - Worldwide Patient Experience of Acute Porphyrias - Summing UP features the latest porphyria research in easy-to-understand summaries that have been reviewed and approved by the UPA's Scientific Advisory Board of porphyria experts. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/fbe08fd8-e668-4083-9fa2-74526729aadc/scientific_advisory_board.png Porphyria Spotlight - Worldwide Patient Experience of Acute Porphyrias - CONTENT REVIEWED BY UNITED PORPHYRIAS ASSOCIATION SCIENTIFIC ADVISORY BOARD https://www.porphyria.org/features/live04012024-acute monthly 0.5 2024-09-17 https://www.porphyria.org/features/live04012024-cutaneous monthly 0.5 2024-09-17 https://www.porphyria.org/features/profile2403 monthly 0.5 2024-12-02 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/73076348-6266-4d30-bf4d-667e98cf3fb9/Colin.jpg Porphyria Spotlight - Meet Colin McEwen, Porphyria Advocate - I want to turn what I went through into something good, because otherwise it’s just suffering for the sake of suffering, and I can’t accept that. I want to do something more with my story -Colin https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/d4d3cf2d-6957-4909-a255-3508ac06c484/Meet+your+experts.png Porphyria Spotlight - Meet Colin McEwen, Porphyria Advocate - Meet more of the experts and advocates changing the world for porphyria https://www.porphyria.org/features/sumup8 monthly 0.5 2024-11-06 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/e5ac64e4-1c5b-4840-b411-6e632e7ad9f5/Sum+UP+logo+%281%29.jpg Porphyria Spotlight - EPP/XLP Consensus Guidelines - Summing UP features the latest porphyria research in easy-to-understand summaries that have been reviewed and approved by the UPA's Scientific Advisory Board of porphyria experts. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/fbe08fd8-e668-4083-9fa2-74526729aadc/scientific_advisory_board.png Porphyria Spotlight - EPP/XLP Consensus Guidelines - CONTENT REVIEWED BY UNITED PORPHYRIAS ASSOCIATION SCIENTIFIC ADVISORY BOARD https://www.porphyria.org/features/profile2402 monthly 0.5 2024-12-02 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/a5c2ad1a-13c5-4c0e-b63f-5ef55bbad8e7/Joe.jpg Porphyria Spotlight - Meet Honorable Joe Crowley, UPA Director and Former Congressman - Building that connection with your elected officials can help sensitize them to that reality and keep them engaged in rare disease issues. -Hon. Joe Crowley https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/d4d3cf2d-6957-4909-a255-3508ac06c484/Meet+your+experts.png Porphyria Spotlight - Meet Honorable Joe Crowley, UPA Director and Former Congressman - Meet more of the experts and advocates changing the world for porphyria https://www.porphyria.org/features/profile2401 monthly 0.5 2024-12-12 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/01770df6-87e6-40d1-bfd2-2738c778188b/Kristen.jpg Porphyria Spotlight - Meet Kristen Wheeden, UPA President - Collaboration between patients, caregivers, advocates, expert physicians, industry partners and regulators is necessary to realize advancements in porphyria. All of us doing our important roles can lead to better diagnostics, new therapies and better quality of life for our patient community -Kristen Wheeden https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/d4d3cf2d-6957-4909-a255-3508ac06c484/Meet+your+experts.png Porphyria Spotlight - Meet Kristen Wheeden, UPA President - Meet more of the experts and advocates changing the world for porphyria https://www.porphyria.org/features/profile2312 monthly 0.5 2024-12-02 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/c1d005d6-d644-4270-a4f3-7e56a9f2c9e3/Bonkovsky.jpg Porphyria Spotlight - Meet Dr. Herbert Bonkovsky - With rare diseases, you could call every patient a clinical trial of one because each one is unique. It is important to listen to them and try to address their symptoms -Dr. Herbert Bonkovsky https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/d4d3cf2d-6957-4909-a255-3508ac06c484/Meet+your+experts.png Porphyria Spotlight - Meet Dr. Herbert Bonkovsky - Meet more of the experts and advocates changing the world for porphyria https://www.porphyria.org/features/ips2023-guidelines1 monthly 0.5 2024-12-13 https://www.porphyria.org/features/sumup6 monthly 0.5 2024-08-23 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/e5ac64e4-1c5b-4840-b411-6e632e7ad9f5/Sum+UP+logo+%281%29.jpg Porphyria Spotlight - Acute hepatic porphyria and anaesthesia - Summing UP features the latest porphyria research in easy-to-understand summaries that have been reviewed and approved by the UPA's Scientific Advisory Board of porphyria experts. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/fbe08fd8-e668-4083-9fa2-74526729aadc/scientific_advisory_board.png Porphyria Spotlight - Acute hepatic porphyria and anaesthesia - CONTENT REVIEWED BY UNITED PORPHYRIAS ASSOCIATION SCIENTIFIC ADVISORY BOARD https://www.porphyria.org/features/wud2311 monthly 0.5 2024-09-17 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/8c185a3e-d64d-403f-b66d-d868883ea026/whats-up-doc.jpg Porphyria Spotlight - Surgery precautions and cutaneous porphyrias - What's UP Doc? Is a regular column where we feature a patient question along with a response from a member of the UPA Scientific Advisory Board. https://www.porphyria.org/features/ips2023-power monthly 0.5 2024-09-17 https://www.porphyria.org/features/wud231023 monthly 0.5 2024-09-17 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/8c185a3e-d64d-403f-b66d-d868883ea026/whats-up-doc.jpg Porphyria Spotlight - Acute porphyria and liver tests - What's UP Doc? Is a regular column where we feature a patient question along with a response from a member of the UPA Scientific Advisory Board. https://www.porphyria.org/features/profile2310 monthly 0.5 2024-09-17 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/5736d496-6738-416f-8ca8-d32115052851/Thapar+Manish+white+coat.jpg Porphyria Spotlight - Meet Dr. Manish Thapar - Patients can drive the field, move the field. -Dr. Manish Thapar https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/83cead5d-6e06-442a-a4b6-cb74f5a0bed5/scientific_advisory_board.png Porphyria Spotlight - Meet Dr. Manish Thapar - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/d4d3cf2d-6957-4909-a255-3508ac06c484/Meet+your+experts.png Porphyria Spotlight - Meet Dr. Manish Thapar - Meet more of the experts and advocates changing the world for porphyria https://www.porphyria.org/features/sumup5 monthly 0.5 2024-09-11 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/e5ac64e4-1c5b-4840-b411-6e632e7ad9f5/Sum+UP+logo+%281%29.jpg Porphyria Spotlight - EPP/XLP Liver Guidelines - Summing UP features the latest porphyria research in easy-to-understand summaries that have been reviewed and approved by the UPA's Scientific Advisory Board of porphyria experts. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/fbe08fd8-e668-4083-9fa2-74526729aadc/scientific_advisory_board.png Porphyria Spotlight - EPP/XLP Liver Guidelines - CONTENT REVIEWED BY UNITED PORPHYRIAS ASSOCIATION SCIENTIFIC ADVISORY BOARD https://www.porphyria.org/features/profile2309 monthly 0.5 2024-09-17 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/2995cc5e-66ea-48bd-b528-cc4565c611fd/Image+2024-09-11+at+21.09.jpeg Porphyria Spotlight - Meet Dr. Amy Dickey - My connection to porphyria is a bit more personal than a lot of other researchers. I have EPP. -Dr. Amy Dickey https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/99b3cd5c-b771-4234-a478-435ee3da6525/scientific_advisory_board.png Porphyria Spotlight - Meet Dr. Amy Dickey - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/d4d3cf2d-6957-4909-a255-3508ac06c484/Meet+your+experts.png Porphyria Spotlight - Meet Dr. Amy Dickey - Meet more of the experts and advocates changing the world for porphyria https://www.porphyria.org/features/sumup4 monthly 0.5 2024-08-23 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/e5ac64e4-1c5b-4840-b411-6e632e7ad9f5/Sum+UP+logo+%281%29.jpg Porphyria Spotlight - Pregnancy Outcomes with Acute Porphyrias - Summing UP features the latest porphyria research in easy-to-understand summaries that have been reviewed and approved by the UPA's Scientific Advisory Board of porphyria experts. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/fbe08fd8-e668-4083-9fa2-74526729aadc/scientific_advisory_board.png Porphyria Spotlight - Pregnancy Outcomes with Acute Porphyrias - CONTENT REVIEWED BY UNITED PORPHYRIAS ASSOCIATION SCIENTIFIC ADVISORY BOARD https://www.porphyria.org/features/wud230918 monthly 0.5 2024-09-17 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/8c185a3e-d64d-403f-b66d-d868883ea026/whats-up-doc.jpg Porphyria Spotlight - Annual Check ups for inactive AIP - What's UP Doc? Is a regular column where we feature a patient question along with a response from a member of the UPA Scientific Advisory Board. https://www.porphyria.org/features/profile2308 monthly 0.5 2024-09-17 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/7fa487e6-b6ac-4ada-bf95-205813d8b5e1/Image+2024-09-11+at+21.12.jpeg Porphyria Spotlight - Meet Dr. Manisha Balwani - I'm a firm believer that patients should have options for treatment because one size does not fit all. -Dr. Manisha Balwani https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/f0ccfc89-11a3-4816-9570-53ef2ffd4236/scientific_advisory_board.png Porphyria Spotlight - Meet Dr. Manisha Balwani - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/d4d3cf2d-6957-4909-a255-3508ac06c484/Meet+your+experts.png Porphyria Spotlight - Meet Dr. Manisha Balwani - Meet more of the experts and advocates changing the world for porphyria https://www.porphyria.org/features/sumup3 monthly 0.5 2024-08-23 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/e5ac64e4-1c5b-4840-b411-6e632e7ad9f5/Sum+UP+logo+%281%29.jpg Porphyria Spotlight - Light-Related Skin Symptoms in EPP - Summing UP features the latest porphyria research in easy-to-understand summaries that have been reviewed and approved by the UPA's Scientific Advisory Board of porphyria experts. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/fbe08fd8-e668-4083-9fa2-74526729aadc/scientific_advisory_board.png Porphyria Spotlight - Light-Related Skin Symptoms in EPP - CONTENT REVIEWED BY UNITED PORPHYRIAS ASSOCIATION SCIENTIFIC ADVISORY BOARD https://www.porphyria.org/features/sumup2 monthly 0.5 2024-08-23 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/e5ac64e4-1c5b-4840-b411-6e632e7ad9f5/Sum+UP+logo+%281%29.jpg Porphyria Spotlight - Pain in Acute Hepatic Porphyrias - Summing UP features the latest porphyria research in easy-to-understand summaries that have been reviewed and approved by the UPA's Scientific Advisory Board of porphyria experts. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/fbe08fd8-e668-4083-9fa2-74526729aadc/scientific_advisory_board.png Porphyria Spotlight - Pain in Acute Hepatic Porphyrias - CONTENT REVIEWED BY UNITED PORPHYRIAS ASSOCIATION SCIENTIFIC ADVISORY BOARD https://www.porphyria.org/features/sumup1 monthly 0.5 2024-08-23 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/e5ac64e4-1c5b-4840-b411-6e632e7ad9f5/Sum+UP+logo+%281%29.jpg Porphyria Spotlight - RNA interference therapy in AHP - Summing UP features the latest porphyria research in easy-to-understand summaries that have been reviewed and approved by the UPA's Scientific Advisory Board of porphyria experts. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/fbe08fd8-e668-4083-9fa2-74526729aadc/scientific_advisory_board.png Porphyria Spotlight - RNA interference therapy in AHP - CONTENT REVIEWED BY UNITED PORPHYRIAS ASSOCIATION SCIENTIFIC ADVISORY BOARD https://www.porphyria.org/features/live04192023 monthly 0.5 2024-09-17 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/fed266f6-f423-4f8c-bb51-caf1c2397164/copy+of+what%27s+up+thank+you++%281%29.png Porphyria Spotlight - Global Porphyria Day: Live April 19, 2023 - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.porphyria.org/features/live02182023 monthly 0.5 2024-09-17 https://www.porphyria.org/features/wud221202 monthly 0.5 2024-09-11 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/8c185a3e-d64d-403f-b66d-d868883ea026/whats-up-doc.jpg Porphyria Spotlight - Protoporphyria Guidelines - What's UP Doc? Is a regular column where we feature a patient question along with a response from a member of the UPA Scientific Advisory Board. https://www.porphyria.org/features/wud221028 monthly 0.5 2024-12-12 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/8c185a3e-d64d-403f-b66d-d868883ea026/whats-up-doc.jpg Porphyria Spotlight - Panhematin History - What's UP Doc? Is a regular column where we feature a patient question along with a response from a member of the UPA Scientific Advisory Board. https://www.porphyria.org/features/wud220919 monthly 0.5 2024-09-17 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/8c185a3e-d64d-403f-b66d-d868883ea026/whats-up-doc.jpg Porphyria Spotlight - EPP and bone health - What's UP Doc? Is a regular column where we feature a patient question along with a response from a member of the UPA Scientific Advisory Board. https://www.porphyria.org/features/wud220715 monthly 0.5 2024-09-17 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/8c185a3e-d64d-403f-b66d-d868883ea026/whats-up-doc.jpg Porphyria Spotlight - Acute porphyria and kidney health - What's UP Doc? Is a regular column where we feature a patient question along with a response from a member of the UPA Scientific Advisory Board. https://www.porphyria.org/features/wud220624 monthly 0.5 2024-09-17 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/8c185a3e-d64d-403f-b66d-d868883ea026/whats-up-doc.jpg Porphyria Spotlight - PCT and menopause - What's UP Doc? Is a regular column where we feature a patient question along with a response from a member of the UPA Scientific Advisory Board. https://www.porphyria.org/features/wud220617 monthly 0.5 2024-09-17 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/8c185a3e-d64d-403f-b66d-d868883ea026/whats-up-doc.jpg Porphyria Spotlight - Givlaari for acute porphyria - What's UP Doc? Is a regular column where we feature a patient question along with a response from a member of the UPA Scientific Advisory Board. https://www.porphyria.org/features/wud220520 monthly 0.5 2024-12-12 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/8c185a3e-d64d-403f-b66d-d868883ea026/whats-up-doc.jpg Porphyria Spotlight - Confusion during acute attacks - What's UP Doc? Is a regular column where we feature a patient question along with a response from a member of the UPA Scientific Advisory Board. https://www.porphyria.org/features/wud220506 monthly 0.5 2024-09-17 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/8c185a3e-d64d-403f-b66d-d868883ea026/whats-up-doc.jpg Porphyria Spotlight - How many people have porphyria - What's UP Doc? Is a regular column where we feature a patient question along with a response from a member of the UPA Scientific Advisory Board. https://www.porphyria.org/features/wud220429 monthly 0.5 2024-09-17 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/8c185a3e-d64d-403f-b66d-d868883ea026/whats-up-doc.jpg Porphyria Spotlight - Acute porphyrias and heart health - What's UP Doc? Is a regular column where we feature a patient question along with a response from a member of the UPA Scientific Advisory Board. https://www.porphyria.org/features/wud220422 monthly 0.5 2024-09-17 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/8c185a3e-d64d-403f-b66d-d868883ea026/whats-up-doc.jpg Porphyria Spotlight - Porphyrias Consortium - What's UP Doc? Is a regular column where we feature a patient question along with a response from a member of the UPA Scientific Advisory Board. https://www.porphyria.org/features/wud220415 monthly 0.5 2024-09-12 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/8c185a3e-d64d-403f-b66d-d868883ea026/whats-up-doc.jpg Porphyria Spotlight - Enzymes and porphyria - What's UP Doc? Is a regular column where we feature a patient question along with a response from a member of the UPA Scientific Advisory Board. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/0ffb4265-ac4a-4c81-9c6f-a39833000c0e/heme-logo.jpg Porphyria Spotlight - Enzymes and porphyria - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.porphyria.org/features/wud220325 monthly 0.5 2024-09-17 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/8c185a3e-d64d-403f-b66d-d868883ea026/whats-up-doc.jpg Porphyria Spotlight - Making a health care team - What's UP Doc? Is a regular column where we feature a patient question along with a response from a member of the UPA Scientific Advisory Board. https://www.porphyria.org/features/wud220318 monthly 0.5 2024-09-17 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/8c185a3e-d64d-403f-b66d-d868883ea026/whats-up-doc.jpg Porphyria Spotlight - CEP and dental care - What's UP Doc? Is a regular column where we feature a patient question along with a response from a member of the UPA Scientific Advisory Board. https://www.porphyria.org/features/wud220311 monthly 0.5 2024-09-17 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/8c185a3e-d64d-403f-b66d-d868883ea026/whats-up-doc.jpg Porphyria Spotlight - Acute porphyria and homocysteine - What's UP Doc? Is a regular column where we feature a patient question along with a response from a member of the UPA Scientific Advisory Board. https://www.porphyria.org/features/wud220304 monthly 0.5 2024-12-12 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/8c185a3e-d64d-403f-b66d-d868883ea026/whats-up-doc.jpg Porphyria Spotlight - EPP and iron supplements - What's UP Doc? Is a regular column where we feature a patient question along with a response from a member of the UPA Scientific Advisory Board. https://www.porphyria.org/features/wud220225 monthly 0.5 2024-09-17 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/8c185a3e-d64d-403f-b66d-d868883ea026/whats-up-doc.jpg Porphyria Spotlight - Acute porphyria and pain - What's UP Doc? Is a regular column where we feature a patient question along with a response from a member of the UPA Scientific Advisory Board. https://www.porphyria.org/features/wud220211 monthly 0.5 2024-09-17 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/8c185a3e-d64d-403f-b66d-d868883ea026/whats-up-doc.jpg Porphyria Spotlight - Acute porphyria and liver health - What's UP Doc? Is a regular column where we feature a patient question along with a response from a member of the UPA Scientific Advisory Board. https://www.porphyria.org/features/wud220204 monthly 0.5 2024-12-12 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/8c185a3e-d64d-403f-b66d-d868883ea026/whats-up-doc.jpg Porphyria Spotlight - EPP and porphyrin damage - What's UP Doc? Is a regular column where we feature a patient question along with a response from a member of the UPA Scientific Advisory Board. https://www.porphyria.org/features/wud220128 monthly 0.5 2024-12-12 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/8c185a3e-d64d-403f-b66d-d868883ea026/whats-up-doc.jpg Porphyria Spotlight - Planning for an attack - What's UP Doc? Is a regular column where we feature a patient question along with a response from a member of the UPA Scientific Advisory Board. https://www.porphyria.org/features/category/Summing+UP monthly 0.5 https://www.porphyria.org/features/category/Acute+porphyrias monthly 0.5 https://www.porphyria.org/features/category/Porphyria+Voices monthly 0.5 https://www.porphyria.org/features/category/News monthly 0.5 https://www.porphyria.org/features/category/AIP monthly 0.5 https://www.porphyria.org/features/category/Porphyria+Experts monthly 0.5 https://www.porphyria.org/features/category/What%27s+UP+Doc%3F monthly 0.5 https://www.porphyria.org/features/category/Recordings monthly 0.5 https://www.porphyria.org/features/category/Stories monthly 0.5 https://www.porphyria.org/features/tag/PCT monthly 0.5 https://www.porphyria.org/features/tag/Karp+Leaf monthly 0.5 https://www.porphyria.org/features/tag/Keel monthly 0.5 https://www.porphyria.org/features/tag/EPP monthly 0.5 https://www.porphyria.org/features/tag/Kazamel monthly 0.5 https://www.porphyria.org/features/tag/aip monthly 0.5 https://www.porphyria.org/features/tag/Thapar monthly 0.5 https://www.porphyria.org/features/tag/Wang monthly 0.5 https://www.porphyria.org/features/tag/Phillips monthly 0.5 https://www.porphyria.org/features/tag/ADP monthly 0.5 https://www.porphyria.org/features/tag/cep monthly 0.5 https://www.porphyria.org/features/tag/spring monthly 0.5 https://www.porphyria.org/features/tag/Naik monthly 0.5 https://www.porphyria.org/features/tag/holidays monthly 0.5 https://www.porphyria.org/features/tag/hcp monthly 0.5 https://www.porphyria.org/features/tag/caregiver monthly 0.5 https://www.porphyria.org/features/tag/McGuire monthly 0.5 https://www.porphyria.org/features/tag/Desnick monthly 0.5 https://www.porphyria.org/features/tag/XLP monthly 0.5 https://www.porphyria.org/features/tag/pct monthly 0.5 https://www.porphyria.org/features/tag/epp monthly 0.5 https://www.porphyria.org/features/tag/AIP monthly 0.5 https://www.porphyria.org/features/tag/Yasuda monthly 0.5 https://www.porphyria.org/features/tag/Anderson monthly 0.5 https://www.porphyria.org/features/tag/christmas monthly 0.5 https://www.porphyria.org/features/tag/Bonkovsky monthly 0.5 https://www.porphyria.org/features/tag/Erwin monthly 0.5 https://www.porphyria.org/features/tag/CEP monthly 0.5 https://www.porphyria.org/features/tag/HCP monthly 0.5 https://www.porphyria.org/features/tag/Balwani monthly 0.5 https://www.porphyria.org/features/tag/VP monthly 0.5 https://www.porphyria.org/features/tag/vp monthly 0.5 https://www.porphyria.org/features/tag/Dickey monthly 0.5 https://www.porphyria.org/events daily 0.75 2026-03-29 https://www.porphyria.org/events/ahpparalysis26-04 monthly 0.5 2026-03-29 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/7bcfe430-6f6d-488f-b3af-10dd4507ffaf/Connect+UP+email+header+%281%29.png Events - Acute Porphyrias & Paralysis Connect UP - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.porphyria.org/events/cutaneousup26-04-26 monthly 0.5 2026-03-29 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/7bcfe430-6f6d-488f-b3af-10dd4507ffaf/Connect+UP+email+header+%281%29.png Events - Cutaneous Porphyrias Connect UP - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.porphyria.org/events/ahpconnect0401-y45m5 monthly 0.5 2026-03-26 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/7bcfe430-6f6d-488f-b3af-10dd4507ffaf/Connect+UP+email+header+%281%29.png Events - Acute Porphyrias Connect UP - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.porphyria.org/events/ahpmenconnect03-19 monthly 0.5 2026-03-26 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/7bcfe430-6f6d-488f-b3af-10dd4507ffaf/Connect+UP+email+header+%281%29.png Events - Men with Acute Porphyrias Connect UP - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.porphyria.org/events/faithconnect26-04 monthly 0.5 2026-03-26 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/7bcfe430-6f6d-488f-b3af-10dd4507ffaf/Connect+UP+email+header+%281%29.png Events - Reflection & Prayer Connect UP - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.porphyria.org/events/caregiverconnect26-04 monthly 0.5 2026-03-26 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/7bcfe430-6f6d-488f-b3af-10dd4507ffaf/Connect+UP+email+header+%281%29.png Events - Porphyria Caregivers Connect UP - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.porphyria.org/events/ahpconnect0401 monthly 0.5 2026-03-26 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/7bcfe430-6f6d-488f-b3af-10dd4507ffaf/Connect+UP+email+header+%281%29.png Events - Acute Porphyrias Connect UP - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.porphyria.org/events/cepup26-05 monthly 0.5 2026-03-27 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/7bcfe430-6f6d-488f-b3af-10dd4507ffaf/Connect+UP+email+header+%281%29.png Events - CEP & HEP Connect UP - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.porphyria.org/events/ahpconnect0325 monthly 0.5 2026-03-12 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/7bcfe430-6f6d-488f-b3af-10dd4507ffaf/Connect+UP+email+header+%281%29.png Events - Acute Porphyrias Connect UP - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.porphyria.org/events/ahpconnect0318 monthly 0.5 2026-03-12 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/7bcfe430-6f6d-488f-b3af-10dd4507ffaf/Connect+UP+email+header+%281%29.png Events - Acute Porphyrias Connect UP - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.porphyria.org/events/nutritionquestions monthly 0.5 2026-03-27 https://www.porphyria.org/events/cutaneousup26-03-29 monthly 0.5 2026-03-26 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/7bcfe430-6f6d-488f-b3af-10dd4507ffaf/Connect+UP+email+header+%281%29.png Events - Cutaneous Porphyrias Connect UP - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.porphyria.org/events/caregiverconnect26-03 monthly 0.5 2026-03-23 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/7bcfe430-6f6d-488f-b3af-10dd4507ffaf/Connect+UP+email+header+%281%29.png Events - Porphyria Caregivers Connect UP - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.porphyria.org/events/ahpparalysis monthly 0.5 2026-03-29 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/7bcfe430-6f6d-488f-b3af-10dd4507ffaf/Connect+UP+email+header+%281%29.png Events - Acute Porphyrias & Paralysis Connect UP - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.porphyria.org/events/ahpconnect03011 monthly 0.5 2026-02-25 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/7bcfe430-6f6d-488f-b3af-10dd4507ffaf/Connect+UP+email+header+%281%29.png Events - Acute Porphyrias Connect UP - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.porphyria.org/events/ahpmenconnect03-15 monthly 0.5 2026-02-20 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/7bcfe430-6f6d-488f-b3af-10dd4507ffaf/Connect+UP+email+header+%281%29.png Events - Men with Acute Porphyrias Connect UP - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.porphyria.org/events/cepup26-03 monthly 0.5 2026-02-20 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/7bcfe430-6f6d-488f-b3af-10dd4507ffaf/Connect+UP+email+header+%281%29.png Events - CEP & HEP Connect UP - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.porphyria.org/events/ahpconnect0304 monthly 0.5 2026-02-20 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/7bcfe430-6f6d-488f-b3af-10dd4507ffaf/Connect+UP+email+header+%281%29.png Events - Acute Porphyrias Connect UP - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.porphyria.org/events/bitopertincall monthly 0.5 2026-02-17 https://www.porphyria.org/events/faithconnect monthly 0.5 2026-03-23 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/7bcfe430-6f6d-488f-b3af-10dd4507ffaf/Connect+UP+email+header+%281%29.png Events - Reflection & Prayer Connect UP - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.porphyria.org/events/ahpconnect0225 monthly 0.5 2026-02-12 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/7bcfe430-6f6d-488f-b3af-10dd4507ffaf/Connect+UP+email+header+%281%29.png Events - Acute Porphyrias Connect UP - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.porphyria.org/events/ahpmenconnect0215 monthly 0.5 2026-02-20 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/7bcfe430-6f6d-488f-b3af-10dd4507ffaf/Connect+UP+email+header+%281%29.png Events - Men with Acute Porphyrias Connect UP - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.porphyria.org/events/ahpconnect0218 monthly 0.5 2026-02-09 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/7bcfe430-6f6d-488f-b3af-10dd4507ffaf/Connect+UP+email+header+%281%29.png Events - Acute Porphyrias Connect UP - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.porphyria.org/events/ahpconnect0211 monthly 0.5 2026-02-09 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/7bcfe430-6f6d-488f-b3af-10dd4507ffaf/Connect+UP+email+header+%281%29.png Events - Acute Porphyrias Connect UP - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.porphyria.org/events/stronger-together monthly 0.5 2026-03-23 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/bf5df894-d554-4132-8d32-98d6ac045bd0/CEPMemories.png Events - CEP: Living Stronger Together Weekend - CEP patients, families and caregivers shared an incredible weekend in Cleveland, OH https://www.porphyria.org/events/caregiverconnect26-02 monthly 0.5 2026-03-03 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/7bcfe430-6f6d-488f-b3af-10dd4507ffaf/Connect+UP+email+header+%281%29.png Events - Porphyria Caregivers Connect UP - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.porphyria.org/events/cutaneousup26-03 monthly 0.5 2026-03-03 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/7bcfe430-6f6d-488f-b3af-10dd4507ffaf/Connect+UP+email+header+%281%29.png Events - Cutaneous Porphyrias Connect UP - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.porphyria.org/events/cepup26-02 monthly 0.5 2026-02-03 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/7bcfe430-6f6d-488f-b3af-10dd4507ffaf/Connect+UP+email+header+%281%29.png Events - CEP & HEP Connect UP - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.porphyria.org/events/ahpnervesquestions monthly 0.5 2026-03-12 https://www.porphyria.org/events/cutaneousup26-01 monthly 0.5 2026-02-03 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/7bcfe430-6f6d-488f-b3af-10dd4507ffaf/Connect+UP+email+header+%281%29.png Events - Cutaneous Porphyrias Connect UP - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.porphyria.org/events/ahpup-2601 monthly 0.5 2026-01-16 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/7bcfe430-6f6d-488f-b3af-10dd4507ffaf/Connect+UP+email+header+%281%29.png Events - AHP Breathwork Connect UP - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.porphyria.org/events/cepup26-01 monthly 0.5 2026-01-09 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/7bcfe430-6f6d-488f-b3af-10dd4507ffaf/Connect+UP+email+header+%281%29.png Events - CEP Connect UP - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.porphyria.org/events/ahpdrugsafety monthly 0.5 2026-02-02 https://www.porphyria.org/events/sun-escape-2026 monthly 0.5 2025-12-11 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/97f35359-d26a-4361-9a2d-b19695fe6250/Sun+Escape+%282%29.jpg Events - Sun Escape 2026 - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.porphyria.org/events/livertransplant monthly 0.5 2025-12-12 https://www.porphyria.org/events/wud2511 monthly 0.5 2025-12-12 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/1556f384-0f8e-4019-8ceb-611550b6a0dc/Whats+UP+Live++%281%29.png Events - What’s UP Doc? Live with Dr. Bruce Wang - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.porphyria.org/events/ahpnerves monthly 0.5 2025-12-12 https://www.porphyria.org/events/patient-and-family-2025 monthly 0.5 2025-09-16 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/169e0e11-d4eb-406c-8265-d7289403c3cd/IPS+P%26F3.png Events - Patient & Family Weekend at IPS 2025 - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/2655aaa2-8327-48fd-8927-1d15e6a2ed27/Copy+of+Sun+Escape+Cover.png Events - Patient & Family Weekend at IPS 2025 - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.porphyria.org/events/cep-fda monthly 0.5 2025-11-10 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/edbeacd4-1176-402d-804c-000e099f1bda/Disc+Logo.png Events - CEP Patient-Focused Drug Development Meeting - Thank you to Disc Medicine for their regulatory support of the meeting. https://www.porphyria.org/events/connect-fitness monthly 0.5 2025-08-21 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/b0657b59-3afc-43f1-8ad2-fccac839782f/Fitness+.png Events - Connect UP! Staying fit with porphyria - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.porphyria.org/events/reunion2025 monthly 0.5 2025-07-24 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/87f3a897-5fe3-4219-b493-e93ed5eb5c46/Palooza+Reunion+%281%29.png Events - Porphyria Palooza Reunion (Online)! - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.porphyria.org/events/science monthly 0.5 2025-12-12 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/232fa4d1-421d-4ff9-bb8d-f99e1635bded/Molecules+to+Medicine.png Events - Molecules to Medicine: The Science of Porphyria - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.porphyria.org/events/healthwell monthly 0.5 2025-06-11 https://www.porphyria.org/events/wud2505 monthly 0.5 2025-05-26 https://www.porphyria.org/events/globalday25 monthly 0.5 2025-04-25 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/e60b90a7-6eeb-463c-a5ed-44b656079bae/Global+Porphyria+Day+Header.png Events - Global Porphyria Day 2025 - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.porphyria.org/events/ahptreatment monthly 0.5 2025-12-12 https://www.porphyria.org/events/lightprotection monthly 0.5 2025-12-12 https://www.porphyria.org/events/international-porphyrias-symposium-2025 monthly 0.5 2025-09-02 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/ab0c1c22-35e1-44f9-a22f-5a13db69f39a/IPS+2025+Banner.png Events - International Porphyrias Symposium 2025 - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/0c159979-5109-4cb0-95e0-335e718853a9/IPSflyer.png Events - International Porphyrias Symposium 2025 - DOWNLOAD & SHARE IPS 2025 Flyer https://www.porphyria.org/events/sun-escape-2025 monthly 0.5 2025-12-11 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/97f35359-d26a-4361-9a2d-b19695fe6250/Sun+Escape+%282%29.jpg Events - Sun Escape 2025 - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.porphyria.org/events/patient-day-ips-2023 monthly 0.5 2025-01-14 https://www.porphyria.org/events/bitopertin-trial-update monthly 0.5 2024-12-13 https://www.porphyria.org/events/not-always-me monthly 0.5 2024-12-13 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/db4321fd-f83c-4e9b-83c9-37b8f9eeb730/Im+not+always+me.png Events - "I'm Not Always Me": A Conversation - Join us for a special discussion based on based on Kalyn Shelton's memoir, I'm Not Always Me: Living with Porphyria on Saturday, June 15th. Explore the challenges of living with acute intermittent porphyria and the significance of community support and advocacy. Don't miss this chance to engage in a meaningful conversation. https://www.porphyria.org/events/sun-escape-2024 monthly 0.5 2025-01-13 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/97f35359-d26a-4361-9a2d-b19695fe6250/Sun+Escape+%282%29.jpg Events - Sun Escape 2024 - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.porphyria.org/events/wud2410-k73ke monthly 0.5 2025-06-11 https://www.porphyria.org/events/wud2405 monthly 0.5 2025-06-11 https://www.porphyria.org/events/reproductivehealth monthly 0.5 2025-12-12 https://www.porphyria.org/events/wud2410 monthly 0.5 2025-06-11 https://www.porphyria.org/events/cup240715 monthly 0.5 2026-01-09 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/89ec713a-9b37-4f80-9265-4e044c4213c0/Connect+UP+AHP+July+1+%28Instagram+Post%29.png Events - Connect UP - Connect with your porphyria friends! Connect UP are regular, small group meetings led of a fellow porphyria patient or caregiver over Zoom. https://www.porphyria.org/events/nutrition-en monthly 0.5 2024-12-13 https://www.porphyria.org/events/porphyriapalooza monthly 0.5 2024-12-13 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/fbbeb8e6-32dd-424d-a8fe-3d6850697624/%23PorphyriaPalooza.png Events - PorphyriaPalooza - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.porphyria.org/stories daily 0.75 2026-03-10 https://www.porphyria.org/stories/danielcep monthly 0.5 2026-03-10 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/9a009e2a-c03f-46f8-b30b-616250cd7bf1/daniel+cep Stories - Meet Daniel, CEP Warrior - "His journey began almost immediately after birth, when he spent his first months of life in the NICU." -Mariana, Daniel’s mother. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/fe608a83-9c81-4cf8-ad0b-ee5189ac198c/WhatsApp+Image+2026-03-08+at+05.43.26.jpeg Stories - Meet Daniel, CEP Warrior - “Daniel finally underwent a life-changing bone marrow transplant with the hope of curing his CEP.” -Mariana, Daniel’s mother. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/aed66cba-2c31-4a4f-99a1-9e1043c5d0cb/WhatsApp+Image+2026-03-08+at+05.49.18+%282%29.jpeg Stories - Meet Daniel, CEP Warrior Daniel with his mother, Mariana. https://www.porphyria.org/stories/kayaip monthly 0.5 2026-03-06 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/d358b996-62e2-4d07-8c80-831fea8f12ae/kay Stories - Meet Kay, AIP warrior - "I believe the overwhelming grief combined with those hormonal changes triggered a severe porphyria attack." -Kay, AIP patient. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/5fb5c13b-6b78-46c0-822d-40b2af4628c8/kay+porphyria Stories - Meet Kay, AIP warrior - “When I arrived at the doctor’s office, my urine was strikingly red. I remember thinking, ‘What in the world?’” -Kay, AIP patient. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/636dab1d-14e6-48e8-ace9-3c32b0db6b93/kay+and+family Stories - Meet Kay, AIP warrior Kay at the hospital with the support of her family. https://www.porphyria.org/stories/stacyaip monthly 0.5 2026-02-25 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/de2008c4-cd88-4d3b-8054-bf61af240983/stacy+aip Stories - Meet Stacy, AIP warrior - "I mostly kept it to myself, thinking I was crazy. I didn't want to be looked at as a hypochondriac or looking for attention." -Stacy, AIP patient. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/768d2554-182d-42e0-b43d-9050b1e23a6b/WhatsApp+Image+2026-01-28+at+00.50.51.jpeg Stories - Meet Stacy, AIP warrior - “I was in and out of emergency departments for a few years, being diagnosed with things like IBS and stomach flu over and over.” -Stacy, AIP patient. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/43ee2e78-ee94-4788-b194-fb17e4e89eb8/abb77c42-b438-4d49-bbd7-676cc854e735.JPG Stories - Meet Stacy, AIP warrior Stacy at the hospital with Porphy (UPA’s mascot). https://www.porphyria.org/stories/jenniferpct monthly 0.5 2026-02-18 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/21ae1be0-cd66-486e-bfb5-f8fc448672fb/jennifer+pct Stories - Meet Jennifer, Porphyria Warrior - "Porphyria doesn’t just affect health—it reshapes daily life in ways most people never have to think about." -Jennifer. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/32638981-7a22-47e8-ae6b-7179e4f4353a/jennifer+patient Stories - Meet Jennifer, Porphyria Warrior - “When you’re very sick for a long time, parts of who you were don’t survive it. They fall away. And something new takes their place.” -Jennifer. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/3dae09fb-b9ef-47c9-ae29-bbbc3011fd46/jennifer+rare+artist Stories - Meet Jennifer, Porphyria Warrior Jennifer selected as a RareArtist in 2019. “Starry Burst” photograph. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/a1fa67e7-aec8-4f0a-967f-6352ebabe0b4/1000104788.jpg Stories - Meet Jennifer, Porphyria Warrior - Make it stand out One of Jennifer’s photographs. https://www.porphyria.org/stories/jonivp monthly 0.5 2026-02-16 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/1d0f81bb-d50f-484e-8db8-6ac31ba42e9e/joni+welda Stories - Meet Joni, VP Warrior - “I would have reoccurring, unexplained abdominal pain and headaches, always in the same place, fragile skin and seizure like reactions to most medications.” Joni, VP patient. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/2d251ff6-da54-444e-b61f-5dd8bea68736/Joni+Welda+.jpeg Stories - Meet Joni, VP Warrior - “For the next two years I went through every muscle pain relieving treatment known to man: acupuncture, acupressure, PT, dry needling, massage, chiropractic, strain/counter strain, bio-feedback, hydrotherapy and rest.” Joni, VP patient. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/fc2464c7-bc81-432b-b839-6dda0f842346/eagle.jpg Stories - Meet Joni, VP Warrior - “What keeps me going? First, my faith in God and the power of prayer.” Photo of an eagle taken by Joni. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/aaba2c0b-56cf-4781-92bd-861db7129274/wolf Stories - Meet Joni, VP Warrior - Make it stand out Photo of a wolf taken by Joni. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/de4d345c-7cff-42d7-a423-44f078725fa5/does+sparring.jpg Stories - Meet Joni, VP Warrior - Make it stand out Joni’s photography. https://www.porphyria.org/stories/geoffaip monthly 0.5 2026-02-02 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/ec0d80a9-bc80-4b4e-ac50-02caa794f5cc/geoff+aip Stories - Meet Geoff, AIP warrior - "My first symptoms were severe abdominal pain and a growing inability to eat" -Geoff, AIP patient. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/ad1fee57-eafd-4f3e-a9a2-b74a1bdd847e/geoff+hospital Stories - Meet Geoff, AIP warrior - “I was diagnosed with many different conditions, including anorexia, but all my tests continued to come back negative. I felt like I was dying.” -Geoff, AIP patient. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/84cf3d07-e43a-483e-998c-e5fd941cb514/geoff+emergency Stories - Meet Geoff, AIP warrior Geoff being airlifted during a critical porphyria attack. https://www.porphyria.org/stories/kaseycep monthly 0.5 2026-03-09 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/4ae81844-0722-4282-a130-4911bdd48164/kasey+story Stories - Meet Kasey, CEP Warrior - "By my freshman year of high school, I’d undergone 13 surgeries and sustained eight broken bones. " -Kasey, CEP patient. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/0b6ddc6a-9a77-4820-95ea-9679183b952a/kasey+and+family Stories - Meet Kasey, CEP Warrior - “UV filters have or had to be installed over my home and classroom windows, as well as the fluorescent lights” -Kasey, CEP patient. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/67ea9aae-75f6-4ffb-bc07-843555cffc88/D2AAEF42-6049-4D0D-AE10-1D9E3DA5011E.JPG Stories - Meet Kasey, CEP Warrior Kasey with fellow CEP patients during their first-ever gathering in Washington, brought together by the United Porphyrias Association. https://www.porphyria.org/stories/gingeraip monthly 0.5 2026-01-22 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/984a260b-91d6-45ad-bb64-10b6dd01d80a/ginger+davis Stories - Meet Ginger, AIP warrior - "When I experienced hallucinations, seizures, insomnia, and excruciating abdominal and nerve pain, I was still told I was ‘fine,’ that I was exaggerating, or that I was simply looking for medication." -Ginger, AIP patient. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/7b6f5ee2-c730-4ea8-bf12-f5182206ad12/ginger+hospital Stories - Meet Ginger, AIP warrior - “I no longer see porphyria as my enemy, but as something that has built my character, strengthened my faith, and equipped me to support others in ways I once desperately needed myself.” -Ginger, AIP patient. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/92fa2783-dab5-4e19-87d6-fef25318f01f/ginger+and+husband Stories - Meet Ginger, AIP warrior Ginger and her husband. https://www.porphyria.org/stories/justincep monthly 0.5 2026-01-19 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/a6ca4f6a-7133-474b-bdbc-bec777d514f2/justin+as+a+kid Stories - Meet Justin, CEP Warrior - "My diagnosis came when I was just six months old, after my parents noticed that my teeth were coming in dark grey and that my urine was red." -Justin, CEP patient. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/3fdd0990-8c13-429c-9687-94a2007d2021/justin+hospital Stories - Meet Justin, CEP Warrior - “Staying completely covered is not a choice—it’s survival.” -Justin, CEP patient. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/d9c7c6ee-8a57-435d-9274-1fd7f3578ae4/justin+family Stories - Meet Justin, CEP Warrior Justin with his beautiful family. https://www.porphyria.org/stories/scarlettaip monthly 0.5 2026-01-20 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/c1abaa3c-5adf-4fa9-8cf3-b5ab8529aeac/scarlett+hospital Stories - Meet Scarlett, AIP Warrior - "It started with severe abdominal pain, pain so intense that despite having a high pain tolerance, I knew something was very wrong." -Scarlett, AIP patient. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/f03370a4-0784-4141-adc5-a8003ecc32f9/porphyria+attack Stories - Meet Scarlett, AIP Warrior - “The hospital told my mother they planned to send me to the psychiatric ward. They believed I was seeking medications.” -Scarlett, AIP patient. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/079274ef-d51c-4ed8-a3c3-07ef486506d6/scarlett+at+the+hospital Stories - Meet Scarlett, AIP Warrior Scarlett finding moments of self-care even while in the hospital. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/39719228-1a5c-4628-b59a-7bc2bbaf4534/scarlett+life Stories - Meet Scarlett, AIP Warrior - Make it stand out Scarlett uses sound healing to manage pain and find calm. https://www.porphyria.org/stories/savannaaip monthly 0.5 2026-01-06 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/61e2253e-f375-4915-9c10-ebc670ffeba4/savanna+at+the+hospital Stories - Meet Savanna, AIP Warrior - "I was overcome by relentless abdominal pain, vomiting, and an inability to keep anything down." -Savanna, AIP patient. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/8cbdc282-cff6-4fc4-9044-285ba228539a/porphyria+savanna Stories - Meet Savanna, AIP Warrior - “I was often met with skepticism when requesting specific pain management, being wrongly labeled as ‘drug-seeking.’” -Savanna, AIP patient. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/dfa3f9e2-3d14-40e8-9a00-f414764694ad/b0c6edce-7fb3-40bf-ac28-8a34bcda6325.JPG Stories - Meet Savanna, AIP Warrior Savanna, now as a nurse. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/695c9dc7-1fb6-466c-8327-9e81a23f039f/ec4b8566-9673-4e54-bf64-c85b46fbeb77.JPG Stories - Meet Savanna, AIP Warrior - Make it stand out Savanna holding a list of motivational phrases. https://www.porphyria.org/stories/snehavp monthly 0.5 2026-02-09 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/224f2498-c3e6-492e-80d2-14c89802c1c5/sneha+birthday Stories - Meet Sneha, VP Warrior - “It made my skin so sensitive the first layer of skin is removed very easily from just doing chores.” Sneha, VP patient. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/a0b650b8-9c49-497c-9ef3-0cd13be19f15/sneha+vp Stories - Meet Sneha, VP Warrior - “Last September my blood pressure dropped to 30, which made my condition worse” Sneha, VP patient. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/c85b8524-bbc8-492b-825b-dee72db70d58/sneha+hospital Stories - Meet Sneha, VP Warrior - “What keeps me going? First, my faith in God and the power of prayer.” Sneha at the hospital. https://www.porphyria.org/stories/michellemeaneyaip monthly 0.5 2025-11-24 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/107e6f89-3cc5-48ab-83f5-ad677e87a8d3/WhatsApp+Image+2025-11-15+at+23.30.20+%281%29.jpg Stories - Meet Michelle M., AIP Warrior - "Most people compare their health journey to a roller coaster. Mine? More similar to a Tilt-a-Whirl" -Michelle, AIP patient. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/d76d30e4-a228-490f-bbce-c4429a19ca82/michelle+porphyria+attack Stories - Meet Michelle M., AIP Warrior Michelle at the hospital. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/678f0c84-42b4-4864-9a04-f28c537af9e3/michelle+with+leopard Stories - Meet Michelle M., AIP Warrior - Make it stand out Old Michelle being active. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/74a785ee-eb43-445e-89bc-995220e15386/CleanShot+2025-11-24+at+17.28.19%402x.png Stories - Meet Michelle M., AIP Warrior - Make it stand out Michelle speaking at the Patient & Family Conference Day in Washington DC. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/488b09d1-539e-453e-af1d-88ea913f3063/michelle+in+washington Stories - Meet Michelle M., AIP Warrior - “I have people who check in. I have hope. AIP hasn’t broken me. It’s reshaped me.” -Michelle, AIP patient. https://www.porphyria.org/stories/ashleyepp monthly 0.5 2025-11-17 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/1b24ac69-6367-4c4c-8724-e08778759296/Ashley+epp Stories - Meet Ashley, EPP Warrior - “The sun was something most people see as warmth and light, for me, it felt like my enemy” -Ashley, EPP patient. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/eaf79f04-9f4c-4c64-8203-8e4dcad797b9/ashley+and+family Stories - Meet Ashley, EPP Warrior - “By the time I was diagnosed, I was in liver failure, spending 64 days in the hospital.” -Ashley, EPP patient. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/63277c45-5700-4670-8a6c-715431b6d443/WhatsApp+Image+2025-11-11+at+19.15.38.jpg Stories - Meet Ashley, EPP Warrior Ashley feeling the sun without pain. https://www.porphyria.org/stories/sarahaip monthly 0.5 2025-12-16 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/24e7d76b-c14f-48c7-adc6-14703c4d9d90/sarah+aip Stories - Meet Sarah, AIP Warrior - "I started to get severely ill and was hospitalized monthly for weeks at a time." -Sarah, AIP patient. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/65e2395b-c4f2-4079-9374-4bbc3fde968c/sarah+hospital Stories - Meet Sarah, AIP Warrior - “For years I was told it was a PMS symptom or just anxiety.” -Sarah, AIP patient. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/3a16b021-6302-46b1-985c-da07590a834a/sarah+enjoying Stories - Meet Sarah, AIP Warrior Sarah, sitting on the grass in a sunny park, smiling and enjoying a calm moment outdoors after her recovery. https://www.porphyria.org/stories/fidecep monthly 0.5 2025-11-10 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/42afabc9-f406-4760-9575-e2ece92d0df3/fide+miron+cep Stories - Meet Fide, CEP Warrior - "My wounds wouldn’t heal. They would get infected. My fingers would fall off. I still remember the last one I lost." -Fide, CEP patient. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/751da8a0-df4a-4386-93ac-3c83ab23291c/IMG_7802.jpg Stories - Meet Fide, CEP Warrior - “Losing my hands, losing parts of my body, has been one of the hardest parts of this disease. CEP is mutilating. It’s exhausting. And the pain isn’t just physical.” -Fide, CEP patient. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/b690d4ab-ad1b-4fae-9f13-f760b1483c71/cep+meeting Stories - Meet Fide, CEP Warrior Fide reunited for the first time with CEP patients in Washington. https://www.porphyria.org/stories/michelleaip monthly 0.5 2025-11-24 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/0542e23a-f1a7-4ccb-9301-34c4255a56d1/michelle+aip Stories - Meet Michelle, AIP Warrior - "I had pain in the upper part of my stomach, and my lower back hurt so badly... The pain was so severe that I couldn’t keep anything down." -Michelle, AIP patient. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/9f6747de-6f63-4c31-89f2-74de48d5f184/michelle+with+nurses Stories - Meet Michelle, AIP Warrior Michelle with the team of nurses. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/9ea558c8-f0a6-4795-aeab-39f341ca77c0/michelle+with+her+family Stories - Meet Michelle, AIP Warrior - Make it stand out Michelle at the hospital with her family. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/3b02ba26-f2f8-4b6a-b6d4-5060543fbaf5/michelle+wheelchair Stories - Meet Michelle, AIP Warrior - Make it stand out Michelle enjoying the beach. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/d7c84130-454e-492b-99be-bc98b089c973/michelle+husband Stories - Meet Michelle, AIP Warrior - “And my husband — you’ve been my greatest supporter. You stood by me through everything. Nothing was ever too much for you. ” -Michelle, AIP patient. https://www.porphyria.org/stories/katristory monthly 0.5 2025-10-28 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/6bb7bd0f-537a-4fe8-98bf-527fb8e4a193/katrina+paralyzed Stories - Meet Katrina, AIP Warrior - "I began experiencing inexplicable pain. An abdominal pain that wouldn’t go away, like being constantly stabbed, mercilessly" -Katrina, AIP patient. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/65eab75c-d3a8-4757-9820-a6f0a7f2ef07/katrina+in+bed Stories - Meet Katrina, AIP Warrior Katrina, lying paralyzed in her bed. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/c214cf2a-df4a-4ab6-9764-04a26688a716/katrina+paralyzed Stories - Meet Katrina, AIP Warrior - Make it stand out Katrina with the gastrostomy tube, doing physical therapy. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/2326b06c-51c2-4b84-80c7-967eeafaebc6/boxing+katrina Stories - Meet Katrina, AIP Warrior - Make it stand out Katrina, now recovered, boxing. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/f9499d90-4a14-4c48-a748-423cd5a710b4/katrina+t+shirt Stories - Meet Katrina, AIP Warrior - “ I wasn’t going to let anything stop me. I wanted my life back—and better. I fought every day. I got up early to do any crazy thing my physiotherapists recommended. ” -Katrina, AIP patient. https://www.porphyria.org/stories/erinepp monthly 0.5 2025-09-22 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/785edd39-6b73-4c4c-8fc2-2177e6491dc4/erin+epp Stories - Meet Erin, EPP Warrior - "For as long as I can remember, the sun has hurt. Deeply, long lasting acid in my veins." -Erin, EPP patient. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/cc31465e-210e-44f8-a88c-faebdfb96c2f/erin+as+a+kid Stories - Meet Erin, EPP Warrior - “The director sat me down alone, explained in detail what a hypochondriac was, pointed at me and said, ‘that's what you are.’” -Erin, EPP patient. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/269e149b-38af-47ba-8a69-ff98a4c7bfe4/erin+enjoying Stories - Meet Erin, EPP Warrior Erin, happy, enjoying the sunset. https://www.porphyria.org/stories/mariapaulaaip monthly 0.5 2025-09-22 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/c52a17f9-6f71-4e22-b900-a3e7aabd9a17/maria+paula+aip Stories - Meet Maria Paula, AIP Warrior - "My body began to paralyze itself, I lost my voice, and a few days later I stopped breathing on my own" -Maria Paula, AIP patient. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/f36b570c-8753-478d-8d5e-27cdfad57d29/maria+paula+wheelchair Stories - Meet Maria Paula, AIP Warrior - “I had to start therapy morning, noon, and night. And as if that wasn't enough, I had a respiratory crisis.” -Maria Paula, AIP patient. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/aee5ed63-1ff7-4ff9-bdd4-4cc4ace139c8/acute+porphyria+maria+paula Stories - Meet Maria Paula, AIP Warrior Maria Paula, smiling after her courageous battle with acute porphyria. https://www.porphyria.org/stories/aidacep monthly 0.5 2025-09-12 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/85718a5a-f229-46d9-ab0d-b5088995f20f/download.png Stories - Meet Aida, CEP Warrior - "My skin was extremely sensitive to sunlight and even artificial light, which caused painful blisters and wounds." -Aida, CEP patient. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/02d50caa-3c3a-4bf0-9604-6375becb14f0/wheelchair+aida Stories - Meet Aida, CEP Warrior - “After several injuries, I was no longer able to walk, and since then I have used a wheelchair.” -Aida, CEP patient. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/66834a7b-6860-4ed4-a821-32c18321387a/download+%284%29.png Stories - Meet Aida, CEP Warrior Aida with her painting. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/9ca5415f-5a6e-45ca-a97c-eb3d269f1832/download+%285%29.png Stories - Meet Aida, CEP Warrior - Make it stand out Aida with her paintings. https://www.porphyria.org/stories/simaaip monthly 0.5 2025-09-02 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/7452a085-46d2-44e7-bfaf-6d8f339a8ac2/sima+story Stories - Meet Sima, AIP Warrior - “It started with a very severe stomachache — like being kicked and then stabbed several times in my stomach” -Sima, AIP patient. https://www.porphyria.org/stories/cortneyepp monthly 0.5 2025-08-04 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/2648d215-3e4f-4910-ac70-006aba033ab6/IMG_3572.jpeg Stories - Meet Cortney, EPP Warrior - "My hands and feet swelled up so bad the skin cracked so where you could almost see bone" -Cortney, EPP patient. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/76ba64c3-2e0a-45cd-a4fb-31c85b8aa55b/cortney+story Stories - Meet Cortney, EPP Warrior - “I didn’t want to miss out on things. I covered up in UV protective clothing and did the things I love” -Cortney, EPP patient. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/249380c4-5408-41dd-ba67-635a4d30440a/bitopertin Stories - Meet Cortney, EPP Warrior Cortney enjoying the sun after clinical trial. https://www.porphyria.org/stories/estephanyupalatam monthly 0.5 2025-08-20 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/2dfe3a56-8ffa-431f-acd8-1f53e6e9a568/estephany+porphyria Stories - Meet Estephany, AIP Warrior - "There’s something powerful about finally putting a name to what you’re going through. " -Estephany, AIP patient. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/5e415188-0390-4bff-ba32-7f3e772542d8/porphyria+palooza Stories - Meet Estephany, AIP Warrior - “For the first time, I was surrounded by others who actually understood me.” -Estephany, AIP patient. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/8ee4cdf5-c7eb-41ac-b277-ca0a574d5a13/noticias+atlantis Stories - Meet Estephany, AIP Warrior Estephany in her interview at Noticias Atlantis in Peru. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/2b167fa5-2d8d-4c53-9a11-fd029a4afc39/kristen+and+estephany Stories - Meet Estephany, AIP Warrior - Make it stand out Estephany and Kristen meeting for the first time in Porphyria Palooza. https://www.porphyria.org/stories/claudiavp monthly 0.5 2025-07-31 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/9ee39ff7-f0e3-4c0d-b431-4c365352295c/claudia+happy Stories - Meet Claudia, VP Warrior - "As I tried to call emergency services, my legs gave out. Then my arms grew weaker—I couldn’t hold the phone." -Claudia, VP patient. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/09a8a140-8f73-41fd-b7dc-e36b24f2d85e/variegate+porphyria Stories - Meet Claudia, VP Warrior - “Trapped in my own body, I could only listen as doctors and nurses talked about me like I wasn’t there.” -Claudia, VP patient. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/fa6fef5f-b6d9-45a6-81be-c8f3c031a3eb/claudia+paralyzed Stories - Meet Claudia, VP Warrior - “The medical team clearly suspected I was faking; how else could they explain my sudden paralysis when MRIs and spinal fluid tests showed nothing?” Craig as a child, outside in the sun wearing protective clothing. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/e335cf26-dbc0-4155-97e0-391719f3ed22/claudia+happy Stories - Meet Claudia, VP Warrior - Make it stand out Claudia feeling good. https://www.porphyria.org/stories/jagruti monthly 0.5 2025-07-24 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/d5bf6c26-6b5d-4989-a7a4-965505a86fef/jagruti+aip Stories - Meet Jagruti, AIP Warrior - "Porphyria didn’t just affect my body. It tried to steal my identity. But I refused to let it win." -Jagruti, AIP patient. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/e9ab71c5-d4fa-4a65-b355-59479fcace6a/jagruti+as+a+child Stories - Meet Jagruti, AIP Warrior - “I was rushed to the hospital and admitted directly to the ICU, where I remained unconscious for an entire month.” -Jagruti, AIP patient. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/6b575412-8917-4fbc-bda8-537f1200693e/Copy+of+blog+covers+%2810%29.png Stories - Meet Jagruti, AIP Warrior Jagruti at the hospital. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/ae14d6f2-e00f-4bc1-a842-77ee05d9a1d5/jagruti+selfie Stories - Meet Jagruti, AIP Warrior - Make it stand out Jagruti now. https://www.porphyria.org/stories/craigleppert monthly 0.5 2025-07-22 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/f93a7a8f-cd0e-44f5-a6b7-bdc6fbb30308/craig.png Stories - Meet Craig, EPP Warrior - "I began screaming and scratching at my face and hands. My grandma later remarked that I sounded like I was on fire." -Craig, EPP patient. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/d41cdd81-d6af-4298-8a0c-54101ccf9e82/craig+as+a+kid Stories - Meet Craig, EPP Warrior - “It didn’t matter if we had to cover ourselves from head to toe; not participating just because the sun was out was never an option.” -Craig, EPP patient. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/7c70a03b-d671-4051-92d6-3ab69de33915/craig+as+a+kid+with+protective+gear Stories - Meet Craig, EPP Warrior Craig as a child, outside in the sun wearing protective clothing. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/b37acf29-97cb-4441-8828-2a021b9e6275/93fa97b5-0830-4378-8977-aaf52ed98685.jpg Stories - Meet Craig, EPP Warrior - Make it stand out Craig at Sun Escape Weekend 2025. https://www.porphyria.org/stories/victoramejias monthly 0.5 2025-09-02 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/2bbfb60c-a681-454f-9712-456b526968e0/victor+story Stories - Meet Victor, EPP Warrior - “I wish people understood our pain and day-to-day struggles, and the help we need to do simple tasks.” -Victor A. Mejías, EPP patient. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/863caa13-df8d-4a68-a1dc-443a4d03d497/vertical+posts+%2819%29.png Stories - Meet Victor, EPP Warrior - “I force myself to push through the emotional and physical pain. I’m not the kind of guy to quit.” -Victor A. Mejías https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/d2d00547-c00f-4df0-a395-72df09609bb3/victor+sun Stories - Meet Victor, EPP Warrior Victor avoiding the sun. https://www.porphyria.org/stories/marianayepes monthly 0.5 2025-07-11 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/b2d37197-1813-4bea-a663-3b35e92c6273/mariana+porphyria Stories - Meet Mariana, AIP Warrior - “It was like my body waging a war against time, a fire that spread relentlessly” -Mariana, AIP patient. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/735a237b-06d3-4ffb-b47a-892e8ac56419/mariana+porphyria Stories - Meet Mariana, AIP Warrior - “The Purple Witch, my invisible companion, would be part of my journey forever.” -Mariana, AIP patient. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/0c37a7e3-38b1-4ba5-a056-04a59e435ef4/porphyria+hospital Stories - Meet Mariana, AIP Warrior Mariana at the hospital. https://www.porphyria.org/stories/mariacep monthly 0.5 2025-06-09 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/45d3f19f-5c14-440a-8a2a-989a80d022d9/CEP+patient Stories - Meet Maria, CEP Warrior - “Why are they staring at me? Why are they laughing?” -Maria, CEP patient. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/c5ca31e8-e31b-4ba0-b218-8a493d893434/skin+disease Stories - Meet Maria, CEP Warrior - “Her skin was unusually pale, her urine still red, and her teeth were turning a dark crimson.” -Marwa, mother of Maria. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/ff7b983f-7f0b-4ea8-af34-9cfb2da08353/maria+cep Stories - Meet Maria, CEP Warrior Maria. https://www.porphyria.org/stories/tamara monthly 0.5 2025-05-28 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/10760198-1acc-46f0-83b2-ae777a2d1bb9/WhatsApp+Image+2025-03-24+at+19.24.54.jpg Stories - Meet Tamara, AIP Warrior - "The doctors told me that not only would I not return to my sporty lifestyle, but I also wouldn’t be able to walk again.” -Tamara, AIP patient. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/fb6f0597-fcab-4c74-bcfe-f9527f829738/WhatsApp+Image+2025-03-23+at+21.13.13.jpg Stories - Meet Tamara, AIP Warrior - “I underwent surgery twice, during which two healthy organs were mistakenly removed.” -Tamara, AIP patient. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/a87335a3-179f-4b4f-9c42-1cc5dcc83bdf/CleanShot+2025-05-07+at+19.18.12%402x.jpg Stories - Meet Tamara, AIP Warrior Tamara reaching a summit. https://www.porphyria.org/stories/melissa monthly 0.5 2025-05-28 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/cbbd2b36-e9a1-45b0-8030-1a205b6b256a/aip+patient Stories - Meet Melissa, AIP Warrior - “Pain hasn’t been the end of my story, but the start of a different path—one with pauses, but also with passion.” -Melissa, AIP patient. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/8a9c5bd3-7125-45e9-bc60-36308ab56a32/porphyria+attack Stories - Meet Melissa, AIP Warrior - “Since then, I’ve lived between violets (like the purple of porphyria) and sunflowers (always seeking light, like my fight against endometriosis).” -Melissa, AIP patient. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/e3bf416c-84a1-4a13-ae17-7fc4c5e22a73/SAVE_20250506_111425.jpg Stories - Meet Melissa, AIP Warrior Melissa and Mariana (Alas Púrpuras) https://www.porphyria.org/stories/jennifer monthly 0.5 2025-05-06 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/e0c0b956-6dc1-409d-9c62-ae49db487d07/jennifer+epp Stories - Meet Jennifer, EPP Warrior - Jennifer’s daily life was marked by isolation and constant pain. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/b48dc079-13dd-4f2c-9088-49c4d1fe17b3/sun+protection Stories - Meet Jennifer, EPP Warrior - Jennifer’s situation improved dramatically after she underwent a breakthrough treatment. https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/8ef85b52-1d90-49f8-ac5f-38480756aaeb/descarga+%281%29+%281%29.png Stories - Meet Jennifer, EPP Warrior Jennifer enjoying outdoor activities. https://www.porphyria.org/stories/julie monthly 0.5 2025-02-24 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/2f3e788c-3df9-4141-9448-8f7d47f8b28f/IMG_3417+%281%29.jpg Stories - Meet Julie, HCP Warrior - “My medical team calls me a unicorn!” https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/899d6841-e5e5-413c-8187-fc183a14030d/IMG_0164+%281%29.jpeg Stories - Meet Julie, HCP Warrior - Doctors often dismissed her symptoms as “all in her head.” https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/16bd920a-db2f-4ef7-b8b2-7cc4be6618e6/IMG_0430.jpg Stories - Meet Julie, HCP Warrior - “What keeps me going? First, my faith in God and the power of prayer.” https://www.porphyria.org/stories/elsie monthly 0.5 2025-02-24 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/dc706a29-9fb8-4f6f-bea5-2b8f080bf900/Elsie+CEP.jpeg Stories - Meet Elsie, CEP Warrior - “I’ve accepted that my relationship with the sun is best described as ‘long-distance, and we don’t talk much.’” https://www.porphyria.org/stories/sean monthly 0.5 2025-12-03 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/33f3c16f-5206-48cf-ad3a-5b8358144f45/Sean+car+racing Stories - Meet Sean, VP Warrior - “As someone who has experienced porphyria symptoms since childhood, I knew that life was never going to be ‘normal.’” https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/d221de1d-3067-4b0d-aed1-d33fed9557c0/variegate+porphyria Stories - Meet Sean, VP Warrior - “Regardless of how porphyria impacts your life, always keep your head up and remain open to positive opportunities in the future.” https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/223f713c-01c5-4e1e-ac7a-5d7d9eeb1a7c/Sean+%26+wife Stories - Meet Sean, VP Warrior - “What keeps me going? First, my faith in God and the power of prayer.” Sean and his wife, Melissa. https://www.porphyria.org/stories/mayra monthly 0.5 2025-02-18 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/8eef14dd-1067-4eaf-9c4e-d8f86d25ffe0/Mayra+with+her+puppy Stories - Meet Mayra, AIP Warrior - “At 38, I was diagnosed with AIP, after a 7-year search for answers, near-death experience, and having rebuilt my body from complete paralysis.” https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/77bf6dca-00fa-4090-99ea-f656bf694ff2/Mayra+at+the+hospital Stories - Meet Mayra, AIP Warrior - “I can time AHP attacks by my monthly cycle. I experience as many as two flares per month still.” https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/cf5f27ba-75f0-48f2-81c1-7be2395de2ff/WhatsApp+Image+2025-02-08+at+17.07.06+%281%29.jpeg Stories - Meet Mayra, AIP Warrior - “I’ve learned that true strength is not measured solely by the body, but by the resilience of the heart and spirit.” https://www.porphyria.org/stories/elizabeth monthly 0.5 2025-02-18 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/1721136878466-C7YP3OQ0LIYJ10CWQ83R/Elizabeth4.jpg Stories - Meet Elizabeth, AIP Warrior - “Living with porphyria is truly like living a double life.” https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/30805b2b-8d32-4ebf-9b54-57bc5b9c172f/Elizabeth1.png Stories - Meet Elizabeth, AIP Warrior - “Symptomatic, I am terrified to go on a walk around the neighborhood for fear of triggering an episode and being stranded.” https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/825527d1-e41c-4cd1-958d-ae49563c093d/Elizabeth3.JPG Stories - Meet Elizabeth, AIP Warrior - There is no “typical” porphyria patient. You are not alone. https://www.porphyria.org/stories/category/Stories monthly 0.5 https://www.porphyria.org/stories/tag/pct monthly 0.5 https://www.porphyria.org/stories/tag/hcp monthly 0.5 https://www.porphyria.org/stories/tag/epp monthly 0.5 https://www.porphyria.org/stories/tag/AIP monthly 0.5 https://www.porphyria.org/stories/tag/aip monthly 0.5 https://www.porphyria.org/stories/tag/vp monthly 0.5 https://www.porphyria.org/stories/tag/upalatam monthly 0.5 https://www.porphyria.org/stories/tag/cep monthly 0.5 https://www.porphyria.org/scientific-advisory-board-entries daily 0.75 2026-02-13 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/fbe08fd8-e668-4083-9fa2-74526729aadc/scientific_advisory_board.png https://www.porphyria.org/scientific-advisory-board-entries/anderson monthly 0.5 2025-03-12 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/0439b89d-651e-4973-9a06-1385a8e39809/Anderson.png Scientific Advisory Board - Karl Anderson, MD: Scientific Advisory Board Chair - UPA Scientific Advisory Board Chair Professor Department of Internal Medicine Division of Gastroenterology and Hepatology Director, Porphyria Laboratory and Center University of Texas Medical Branch Galveston, Texas https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/8c185a3e-d64d-403f-b66d-d868883ea026/whats-up-doc.jpg Scientific Advisory Board - Karl Anderson, MD: Scientific Advisory Board Chair - Dr. Anderson answers your questions https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/fbe08fd8-e668-4083-9fa2-74526729aadc/scientific_advisory_board.png Scientific Advisory Board - Karl Anderson, MD: Scientific Advisory Board Chair - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.porphyria.org/scientific-advisory-board-entries/balwani monthly 0.5 2025-03-12 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/92003779-df17-46fa-9501-6d3a47a00b2f/Balwani.jpg Scientific Advisory Board - Manisha Balwani, MD, MS - UPA Scientific Advisory Board Member Professor Chief, Division of Medical Genetics Department of Genetics and Genomic Sciences Icahn School of Medicine at Mount Sinai New York, New York https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/273c8395-01a3-4f9c-b252-4a885529c12f/WUD.png Scientific Advisory Board - Manisha Balwani, MD, MS - Dr. Balwani answers your questions https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/fbe08fd8-e668-4083-9fa2-74526729aadc/scientific_advisory_board.png Scientific Advisory Board - Manisha Balwani, MD, MS - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.porphyria.org/scientific-advisory-board-entries/beaven monthly 0.5 2025-03-12 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/77a2e77d-c8c8-4385-bf4e-6d1e0d64bb7b/Beaven.png Scientific Advisory Board - Simon W. Beaven, MD, PhD - UPA Scientific Advisory Board Member Chief, Gastroenterology & Hepatology Olive View-UCLA Medical Center Los Angeles, California https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/fbe08fd8-e668-4083-9fa2-74526729aadc/scientific_advisory_board.png Scientific Advisory Board - Simon W. Beaven, MD, PhD - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.porphyria.org/scientific-advisory-board-entries/bissell monthly 0.5 2025-03-12 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/8d4cc55e-37cf-406b-a604-c164953cd723/Bissel.jpeg Scientific Advisory Board - D. Montgomery Bissell, MD - UPA Scientific Advisory Board Member Professor Emeritus, Division of Gastroenterology and Porphyria Center University of California at San Francisco San Francisco, California https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/fbe08fd8-e668-4083-9fa2-74526729aadc/scientific_advisory_board.png Scientific Advisory Board - D. Montgomery Bissell, MD - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.porphyria.org/scientific-advisory-board-entries/bonkovsky monthly 0.5 2025-03-12 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/d31b5f71-6f30-41f1-a8ae-8e9ac5d85162/Bonkovsky.jpg Scientific Advisory Board - Herbert L. Bonkovsky, MD - UPA Scientific Advisory Board Member Professor of Medicine and Molecular Medicine and Translational Science Director of the Laboratory for Liver and Metabolic Disorders Wake Forest University School of Medicine Attending Hepatologist Atrium Health Wake Forest North Carolina Baptist Hospital Winston-Salem, North Carolina https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/8c185a3e-d64d-403f-b66d-d868883ea026/whats-up-doc.jpg Scientific Advisory Board - Herbert L. Bonkovsky, MD - Dr. Bonkovsky answers your questions https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/fbe08fd8-e668-4083-9fa2-74526729aadc/scientific_advisory_board.png Scientific Advisory Board - Herbert L. Bonkovsky, MD - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.porphyria.org/scientific-advisory-board-entries/desnick monthly 0.5 2025-03-12 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/ea4d487a-5624-466c-8287-3d676e9b3336/Desnick.jpg Scientific Advisory Board - Robert J. Desnick, MD, PhD - UPA Scientific Advisory Board Member Dean for Genetics and Genomic Medicine Emeritus Professor and Inaugural Chair Emeritus Department for Genetics and Genomic Sciences Icahn School of Medicine at Mount Sinai New York, New York https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/8c185a3e-d64d-403f-b66d-d868883ea026/whats-up-doc.jpg Scientific Advisory Board - Robert J. Desnick, MD, PhD - Dr. Desnick answers your questions https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/fbe08fd8-e668-4083-9fa2-74526729aadc/scientific_advisory_board.png Scientific Advisory Board - Robert J. Desnick, MD, PhD - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.porphyria.org/scientific-advisory-board-entries/dickey monthly 0.5 2026-02-13 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/1e48f468-325b-4f9e-829f-be211a1803e3/Dickey.png Scientific Advisory Board - Amy Dickey Yeung, MD, MSc - UPA Scientific Advisory Board Member Assistant Professor of Medicine Harvard Medical School Massachusetts General Hospital Boston, Massachusetts https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/8c185a3e-d64d-403f-b66d-d868883ea026/whats-up-doc.jpg Scientific Advisory Board - Amy Dickey Yeung, MD, MSc - Dr. Dickey Yeung answers your questions https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/fbe08fd8-e668-4083-9fa2-74526729aadc/scientific_advisory_board.png Scientific Advisory Board - Amy Dickey Yeung, MD, MSc - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.porphyria.org/scientific-advisory-board-entries/erwin monthly 0.5 2024-09-14 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/c9033deb-07a7-4b55-a1b3-fac2a119ca96/Erwin.jpeg Scientific Advisory Board - Angelika Erwin MD, PhD - UPA Scientific Advisory Board Member Cleveland Clinic Cleveland, Ohio https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/fbe08fd8-e668-4083-9fa2-74526729aadc/scientific_advisory_board.png Scientific Advisory Board - Angelika Erwin MD, PhD - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.porphyria.org/scientific-advisory-board-entries/karp-leaf monthly 0.5 2025-12-12 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/7c7aa2b5-9d30-4ac3-981b-46f905aafa94/Karp+Leaf.png Scientific Advisory Board - Rebecca Karp Leaf, MD - UPA Scientific Advisory Board Member Assistant Professor of Medicine Harvard Medical School Assistant in Medicine Massachusetts General Hospital Boston, Massachusetts https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/273c8395-01a3-4f9c-b252-4a885529c12f/WUD.png Scientific Advisory Board - Rebecca Karp Leaf, MD - Dr. Karp Leaf answers your questions https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/fbe08fd8-e668-4083-9fa2-74526729aadc/scientific_advisory_board.png Scientific Advisory Board - Rebecca Karp Leaf, MD - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.porphyria.org/scientific-advisory-board-entries/kazamel monthly 0.5 2025-12-12 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/1f7ece36-c802-4e37-b2ea-0481c6237038/Kazamel.png Scientific Advisory Board - Mohamed Kazamel, MD - UPA Scientific Advisory Board Member Neuromuscular Disease Specialist Mayo Clinic Arizona https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/8c185a3e-d64d-403f-b66d-d868883ea026/whats-up-doc.jpg Scientific Advisory Board - Mohamed Kazamel, MD - Dr. Kazamel answers your questions https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/fbe08fd8-e668-4083-9fa2-74526729aadc/scientific_advisory_board.png Scientific Advisory Board - Mohamed Kazamel, MD - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.porphyria.org/scientific-advisory-board-entries/keel monthly 0.5 2025-12-12 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/c2564b83-9c67-4135-8337-f61ca1fa72a3/Keel.png Scientific Advisory Board - Sioban B. Keel, MD - UPA Scientific Advisory Board Member Professor of Medicine Division of Hematology University of Washington Seattle, Washington https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/8c185a3e-d64d-403f-b66d-d868883ea026/whats-up-doc.jpg Scientific Advisory Board - Sioban B. Keel, MD - Dr. Keel answers your questions https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/fbe08fd8-e668-4083-9fa2-74526729aadc/scientific_advisory_board.png Scientific Advisory Board - Sioban B. Keel, MD - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.porphyria.org/scientific-advisory-board-entries/levy monthly 0.5 2024-09-14 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/2d0c6089-7ec5-4744-a92a-a485b3aae998/Levy-Cynthia-1.jpg Scientific Advisory Board - Cynthia Levy, MD, FAASLD - UPA Scientific Advisory Board Member Professor of Medicine Arthur Hertz Chair in Liver Diseases Associate Director, Schiff Center for Liver Diseases Division of Digestive Health and Liver Diseases University of Miami Miami, Florida https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/fbe08fd8-e668-4083-9fa2-74526729aadc/scientific_advisory_board.png Scientific Advisory Board - Cynthia Levy, MD, FAASLD - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.porphyria.org/scientific-advisory-board-entries/mazepa monthly 0.5 2024-09-14 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/c19a5c6d-455b-4fa7-89b0-373af4194a19/DocAvatar2.png Scientific Advisory Board - Marshall Mazepa, MD - UPA Scientific Advisory Board Member Assistant Professor of Medicine Division of Hematology, Oncology and Transplantation University of Minnesota Medical School Minneapolis, Minnesota https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/fbe08fd8-e668-4083-9fa2-74526729aadc/scientific_advisory_board.png Scientific Advisory Board - Marshall Mazepa, MD - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.porphyria.org/scientific-advisory-board-entries/mcguire monthly 0.5 2024-09-14 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/f7c5ce9c-55c5-4ad7-b7d0-23ce29f36878/DocAvatar.png Scientific Advisory Board - Brendan M. McGuire, MD, MS - UPA Scientific Advisory Board Member Professor of Medicine Medical Director of Liver Transplantation University of Alabama at Birmingham Birmingham, Alabama https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/8c185a3e-d64d-403f-b66d-d868883ea026/whats-up-doc.jpg Scientific Advisory Board - Brendan M. McGuire, MD, MS - Dr. McGuire answers your questions https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/fbe08fd8-e668-4083-9fa2-74526729aadc/scientific_advisory_board.png Scientific Advisory Board - Brendan M. McGuire, MD, MS - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.porphyria.org/scientific-advisory-board-entries/moghe monthly 0.5 2024-09-14 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/738136ee-7c26-4fbf-8fbc-e1b72569bbe8/Moghe.jpg Scientific Advisory Board - Akshata Moghe MD, PhD - UPA Scientific Advisory Board Member Assistant Professor, Gastroenterology, Hepatology and Nutrition University of Texas Health Science Center at Houston Houston, TX https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/fbe08fd8-e668-4083-9fa2-74526729aadc/scientific_advisory_board.png Scientific Advisory Board - Akshata Moghe MD, PhD - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.porphyria.org/scientific-advisory-board-entries/naik monthly 0.5 2024-09-14 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/25337aa6-6b7a-49bb-85f1-cfacd697e397/Naik.jpg Scientific Advisory Board - Hetanshi Naik, PhD, MS, CGC - UPA Scientific Advisory Board Member Associate Professor Department of Genetics Stanford University School of Medicine Stanford, CA https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/8c185a3e-d64d-403f-b66d-d868883ea026/whats-up-doc.jpg Scientific Advisory Board - Hetanshi Naik, PhD, MS, CGC - Dr. Naik answers your questions https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/fbe08fd8-e668-4083-9fa2-74526729aadc/scientific_advisory_board.png Scientific Advisory Board - Hetanshi Naik, PhD, MS, CGC - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.porphyria.org/scientific-advisory-board-entries/parker monthly 0.5 2024-09-14 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/c19a5c6d-455b-4fa7-89b0-373af4194a19/DocAvatar2.png Scientific Advisory Board - Charles J. Parker, MD - UPA Scientific Advisory Board Member Professor of Medicine Division of Hematology and Hematologic Malignancies University of Utah School of Medicine Salt Lake City, Utah https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/fbe08fd8-e668-4083-9fa2-74526729aadc/scientific_advisory_board.png Scientific Advisory Board - Charles J. Parker, MD - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.porphyria.org/scientific-advisory-board-entries/phillips monthly 0.5 2025-12-12 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/0d917dea-8a98-4718-915e-125f758f9425/Phillips.png Scientific Advisory Board - John Phillips, PhD - UPA Scientific Advisory Board Member Professor of Medicine Division of Hematology Associate Dean of Research and Infrastructure University of Utah School of Medicine Salt Lake City, Utah https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/8c185a3e-d64d-403f-b66d-d868883ea026/whats-up-doc.jpg Scientific Advisory Board - John Phillips, PhD - Dr. Phillips answers your questions https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/fbe08fd8-e668-4083-9fa2-74526729aadc/scientific_advisory_board.png Scientific Advisory Board - John Phillips, PhD - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.porphyria.org/scientific-advisory-board-entries/quigley monthly 0.5 2024-09-12 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/f7c5ce9c-55c5-4ad7-b7d0-23ce29f36878/DocAvatar.png Scientific Advisory Board - John Quigley, MD - UPA Scientific Advisory Board Member Professor of Medicine Division of Hematology/Oncology University of Illinois, Chicago Chicago, Illinois https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/fbe08fd8-e668-4083-9fa2-74526729aadc/scientific_advisory_board.png Scientific Advisory Board - John Quigley, MD - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.porphyria.org/scientific-advisory-board-entries/rudnick monthly 0.5 2024-09-12 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/d26299e4-9097-40c9-8d66-882c4b653b2c/Rudnick.png Scientific Advisory Board - Sean Rudnick, MD - UPA Scientific Advisory Board Member Associate Professor of Medicine Director of Clinical Hepatology Section on Gastroenterology & Hepatology Wake Forest University School of Medicine and Atrium Health Wake Forest Baptist Medical Center Winston-Salem, North Carolina https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/fbe08fd8-e668-4083-9fa2-74526729aadc/scientific_advisory_board.png Scientific Advisory Board - Sean Rudnick, MD - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.porphyria.org/scientific-advisory-board-entries/thapar monthly 0.5 2024-11-06 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/a3eb2c83-c910-409b-866e-ebd9c1a8902f/Thapar+Manish+white+coat.jpg Scientific Advisory Board - Manish Thapar, MD - UPA Scientific Advisory Board Member Associate Professor of Medicine Medical Director, Liver Transplant Program Einstein Medical Center Philadelphia, Pennsylvania https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/8c185a3e-d64d-403f-b66d-d868883ea026/whats-up-doc.jpg Scientific Advisory Board - Manish Thapar, MD - Dr. Thapar answers your questions https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/fbe08fd8-e668-4083-9fa2-74526729aadc/scientific_advisory_board.png Scientific Advisory Board - Manish Thapar, MD - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.porphyria.org/scientific-advisory-board-entries/vercellotti monthly 0.5 2025-03-12 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/c19a5c6d-455b-4fa7-89b0-373af4194a19/DocAvatar2.png Scientific Advisory Board - Gregory M. Vercellotti, MD, FACP - UPA Scientific Advisory Board Member Professor of Medicine Section Head, Classical Hematology Division of Hematology, Oncology, and Transplantation University of Minnesota Medical School Minneapolis, Minnesota https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/fbe08fd8-e668-4083-9fa2-74526729aadc/scientific_advisory_board.png Scientific Advisory Board - Gregory M. Vercellotti, MD, FACP - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.porphyria.org/scientific-advisory-board-entries/wang monthly 0.5 2025-06-11 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/92fed8a8-5db8-4c57-b7ed-0e80f232bea3/Image+2024-09-11+at+21.19+%281%29.jpeg Scientific Advisory Board - Bruce Wang, MD - UPA Scientific Advisory Board Member Associate Professor Division of Gastroenterology Director, UCSF Porphyria Center University of California at San Francisco San Francisco, CA https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/8c185a3e-d64d-403f-b66d-d868883ea026/whats-up-doc.jpg Scientific Advisory Board - Bruce Wang, MD - Dr. Wang answers your questions https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/fbe08fd8-e668-4083-9fa2-74526729aadc/scientific_advisory_board.png Scientific Advisory Board - Bruce Wang, MD - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.porphyria.org/scientific-advisory-board-entries/yasuda monthly 0.5 2024-12-02 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/57e411f7-a8ce-49cf-9203-feee9e362c83/Yasuda_headshot_11262024.jpg Scientific Advisory Board - Makiko Yasuda, MD, PhD - UPA Scientific Advisory Board Member Associate Professor Department of Genetics and Genomic Sciences Icahn School of Medicine at Mount Sinai New York, New York https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/fbe08fd8-e668-4083-9fa2-74526729aadc/scientific_advisory_board.png Scientific Advisory Board - Makiko Yasuda, MD, PhD - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.porphyria.org/scientific-advisory-board-entries/tag/yasuda monthly 0.5 https://www.porphyria.org/scientific-advisory-board-entries/tag/Karp+Leaf monthly 0.5 https://www.porphyria.org/scientific-advisory-board-entries/tag/Keel monthly 0.5 https://www.porphyria.org/scientific-advisory-board-entries/tag/Mazepa monthly 0.5 https://www.porphyria.org/scientific-advisory-board-entries/tag/vercellotti monthly 0.5 https://www.porphyria.org/scientific-advisory-board-entries/tag/Kazamel monthly 0.5 https://www.porphyria.org/scientific-advisory-board-entries/tag/Phillips monthly 0.5 https://www.porphyria.org/scientific-advisory-board-entries/tag/Bissell monthly 0.5 https://www.porphyria.org/scientific-advisory-board-entries/tag/Anderson monthly 0.5 https://www.porphyria.org/scientific-advisory-board-entries/tag/Erwin monthly 0.5 https://www.porphyria.org/scientific-advisory-board-entries/tag/Bonkovsky monthly 0.5 https://www.porphyria.org/scientific-advisory-board-entries/tag/Naik monthly 0.5 https://www.porphyria.org/scientific-advisory-board-entries/tag/Moghe monthly 0.5 https://www.porphyria.org/scientific-advisory-board-entries/tag/wang monthly 0.5 https://www.porphyria.org/scientific-advisory-board-entries/tag/McGuire monthly 0.5 https://www.porphyria.org/scientific-advisory-board-entries/tag/Balwani monthly 0.5 https://www.porphyria.org/scientific-advisory-board-entries/tag/Levy monthly 0.5 https://www.porphyria.org/scientific-advisory-board-entries/tag/Desnick monthly 0.5 https://www.porphyria.org/scientific-advisory-board-entries/tag/Beaven monthly 0.5 https://www.porphyria.org/scientific-advisory-board-entries/tag/Dickey monthly 0.5 https://www.porphyria.org/research-opportunities daily 0.75 2026-02-02 https://www.porphyria.org/research-opportunities/ahpinterview monthly 0.5 2026-01-19 https://www.porphyria.org/research-opportunities/gateway monthly 0.5 2026-01-19 https://www.porphyria.org/research-opportunities/apollo monthly 0.5 2026-01-19 https://www.porphyria.org/research-opportunities/elevate monthly 0.5 2025-06-24 https://www.porphyria.org/research-opportunities/epp-parents monthly 0.5 2025-06-24 https://www.porphyria.org/research-opportunities/survey-epp monthly 0.5 2025-02-27 https://www.porphyria.org/research-opportunities/interview-epp monthly 0.5 2024-12-09 https://www.porphyria.org/research-opportunities/mhahp monthly 0.5 2024-12-09 https://www.porphyria.org/research-opportunities/mhcutaneous monthly 0.5 2024-12-09 https://www.porphyria.org/research-opportunities/cimetidine monthly 0.5 2024-12-09 https://www.porphyria.org/research-opportunities/mt7117 monthly 0.5 2025-04-21 https://www.porphyria.org/research-opportunities/longitudinal monthly 0.5 2025-03-14 https://www.porphyria.org/research-opportunities/safe-drugs monthly 0.5 2026-02-02 https://www.porphyria.org/research-opportunities/epp-modifier monthly 0.5 2024-12-09 https://www.porphyria.org/research-opportunities/category/clinical monthly 0.5 https://www.porphyria.org/research-opportunities/category/Observational monthly 0.5 https://www.porphyria.org/research-opportunities/category/Recruiting-Observational monthly 0.5 https://www.porphyria.org/research-opportunities/category/Closed monthly 0.5 https://www.porphyria.org/research-opportunities/category/recruiting monthly 0.5 https://www.porphyria.org/research-opportunities/category/Recruiting-Clinical monthly 0.5 https://www.porphyria.org/research-opportunities/category/Filled monthly 0.5 https://www.porphyria.org/research-opportunities/tag/PCT monthly 0.5 https://www.porphyria.org/research-opportunities/tag/HEP monthly 0.5 https://www.porphyria.org/research-opportunities/tag/EPP monthly 0.5 https://www.porphyria.org/research-opportunities/tag/HCP monthly 0.5 https://www.porphyria.org/research-opportunities/tag/AIP monthly 0.5 https://www.porphyria.org/research-opportunities/tag/VP monthly 0.5 https://www.porphyria.org/research-opportunities/tag/ADP monthly 0.5 https://www.porphyria.org/research-opportunities/tag/XLP monthly 0.5 https://www.porphyria.org/research-opportunities/tag/CEP monthly 0.5 https://www.porphyria.org/volunteer-opportunities daily 0.75 2026-02-16 https://www.porphyria.org/volunteer-opportunities/council monthly 0.5 2026-02-16 https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/8e40fce3-07bf-4017-8f60-a612225bfe07/UPA+President%27s+Council+Logo.jpg Volunteer - Join UPA’s President’s Council - President’s Council is expanding! https://images.squarespace-cdn.com/content/v1/65be6096c26db4460bdce9d9/2dbfd8ff-3451-4a3f-8acd-347d9a2d7491/A+Note+from.png Volunteer - Join UPA’s President’s Council - I’m Lina Rebeiz, and I live with acute intermittent porphyria (AIP). 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