Meetings & Events
Navigating Porphyria Treatment Costs: How HealthWell Can Help
Join Crystal and Emily from the HealthWell Foundation, as they provide an overview of the HealthWell Porphyrias Fund including the eligibility criteria and application process, and answer your questions.
Molecules to Medicine: The Science of Porphyria
Join Porphyria Expert, John Phillips, PhD and fellow porphyria patient Lina Rebeiz as we delve into the science behind porphyria.
International Porphyrias Symposium 2025
Save the Date! Explore the clinical manifestations of each porphyria, and the latest advances in their diagnosis, management and treatment, including newly approved and emerging therapies with US and International Experts.
Global Porphyria Day 2025
Join us for Global Porphyria Day, a worldwide day of porphyria advocacy and awareness!
What’s UP Doc? Live with Dr. Bruce Wang- Recording Available!
Dr. Bruce Wang, porphyria expert took your questions live on Facebook for Global Porphyria Day!
Light Protection and Porphyria
Recording Available! Join Dr. Amy Dickey and EPP Patient Ginger Gonsalves for a deep dive into protecting yourself from light when you have porphyria.
Treatment Options and Acute Hepatic Porphyrias
Recording Available! Join Dr. Sioban Keel for an informative webinar of treatment options for the acute hepatic porphyria (AIP, HCP and VP).
Reproductive Health and Acute Hepatic Porphyrias
Recording Available! Dr. Rebecca Karp Leaf dives into all things reproductive health and porphyria!
What’s UP Doc? Live with Dr. Bruce Wang
Recording available! Dr. Bruce Wang took your questions live on Facebook.
PorphyriaPalooza
Our porphyria community came together for an incredible weekend of connection, celebration and learning!
Nutrition and Lifestyle in Porphyria- Recording Available
Recording available! Nutritionist and AIP patient Isabel Palazon joined us to discuss lifestyle and nutrition strategies to help manage your porphyria!
Bitopertin Trial UPdate
Join Dr. Amy Dickey to learn more about the the analysis of phase 2 clinical trials testing the safety and effectiveness of bitopertin to treat EPP.
"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.
What’s UP Doc? Live with Dr. Amy Dickey
Recording available! Dr. Amy Dickey took your questions live on Facebook.
What’s UP Doc? Live with Dr. Bruce Wang
Recording available! Dr. Bruce Wang took your questions live on Facebook.
Patient Day at the International Porphyrias Symposium 2023
Recordings available! Leading porphyria experts shared the latest porphyria care recommendations and research.
Partner and Community Events
Discover GIVLAARI® (givosiran): A Treatment for Adults with Acute Hepatic Porphyria (AHP)
Join us for Discover GIVLAARI, an educational event, presented by an Alnylam Patient Education Liaison (PEL), that will help you better understand AHP and how GIVLAARI may help. Learn about how patients prescribed GIVLAARI get started and hear from a patient who is taking GIVLAARI.
June 21st, 2025
Host/PEL & Patient: Kim Bischel & Hannah
12:00 – 2:00 PM ET
Old Vinings Inn (3011 Paces Mill Road SE, Atlanta, GA 30339)