Weekly | Join this Connect UP for people living with Acute Hepatic Porphyria (AHP- includes AIP, HCP, VP & ADP). moderated by Mayra Martinez and Ginger Davis, both living with Acute Intermittent Porphyria (AIP), who bring lived experience, empathy, and care to every conversation.

Monthly | For cutaneous porphyria patients and caregivers! Connect with others who understand what you’re going through. Hosted by Candace.

Join this weekly Connect UP for people living with Acute Hepatic Porphyria (AHP- includes AIP, HCP, VP & ADP). moderated by Mayra Martinez and Ginger Davis, both living with Acute Intermittent Porphyria (AIP), who bring lived experience, empathy, and care to every conversation.

Nutritionist Isabel Palazon is taking your questions on porphyria & nutrition!

For all those with a loved one with porphyria. Whether you are a parent, partner, sibling, child or friend, supporting a someone with porphyria can be hard. Connect with others who understand your journey.

Join us for this special Connect UP for anyone who has experienced paralysis because of their acute hepatic porphyria.

Join this weekly Connect UP for people living with Acute Hepatic Porphyria (AHP- includes AIP, HCP, VP & ADP). moderated by Mayra Martinez and Ginger Davis, both living with Acute Intermittent Porphyria (AIP), who bring lived experience, empathy, and care to every conversation.

Join us for a special Connect Up centered on prayer, reflection, and spiritual support, led by Shawn Willis. This gathering offers a peaceful space to come together, share intentions, and find comfort in community. Whether you’d like to pray, listen, or simply be present, all are welcome.

You're invited to a special Connect Up for men living with Acute Hepatic Porphyria (AHP- includes AIP, HCP, VP & ADP), a supportive and confidential space created to connect with others who understand the unique challenges of living with AHP.

Join this weekly Connect UP for people living with Acute Hepatic Porphyria (AHP- includes AIP, HCP, VP & ADP). moderated by Mayra Martinez and Ginger Davis, both living with Acute Intermittent Porphyria (AIP), who bring lived experience, empathy, and care to every conversation.

For CEP & HEP patients and caregivers! Connect with others who understand what you’re going through. Hosted by Justin.

For all those with a loved one with porphyria. Whether you are a parent, partner, sibling, child or friend, supporting a someone with porphyria can be hard. Connect with others who understand your journey.

Join this weekly Connect UP for people living with Acute Hepatic Porphyria (AHP- includes AIP, HCP, VP & ADP). moderated by Mayra Martinez and Ginger Davis, both living with Acute Intermittent Porphyria (AIP), who bring lived experience, empathy, and care to every conversation.

For cutaneous porphyria patients and caregivers! Connect with others who understand what you’re going through. Hosted by Candace.

Join this weekly Connect UP for people living with Acute Hepatic Porphyria (AHP- includes AIP, HCP, VP & ADP). moderated by Mayra Martinez and Ginger Davis, both living with Acute Intermittent Porphyria (AIP), who bring lived experience, empathy, and care to every conversation.

Join this weekly Connect UP for people living with Acute Hepatic Porphyria (AHP- includes AIP, HCP, VP & ADP). moderated by Mayra Martinez and Ginger Davis, both living with Acute Intermittent Porphyria (AIP), who bring lived experience, empathy, and care to every conversation.

Learn more about FDA is asking for, what Disc Medicine plans to do next, and what this means for patients and families right now. There will be time for questions and for your voice to be heard as we move forward together.

You're invited to a special Connect Up for men living with Acute Hepatic Porphyria (AHP- includes AIP, HCP, VP & ADP), a supportive and confidential space created to connect with others who understand the unique challenges of living with AHP.

Join this weekly Connect UP for people living with Acute Hepatic Porphyria (AHP- includes AIP, HCP, VP & ADP). moderated by Mayra Martinez and Ginger Davis, both living with Acute Intermittent Porphyria (AIP), who bring lived experience, empathy, and care to every conversation.

For CEP & HEP patients and caregivers! Connect with others who understand what you’re going through. Hosted by Justin.

Back by Popular Demand ! Dr. Mohammed Kazamel, Mayo Clinic porphyria expert and neurologist answers your questions live on Zoom.

For cutaneous porphyria patients and caregivers! Connect with others who understand what you’re going through. Hosted by Candace.

Porphyria expert Dr. Bruce Wang (UCSF) and patient advocate Nicolas Frias walk through the basics of using the Drug Safety database so you can feel more confident when navigating medication decisions with AHP.

For acute porphyria (AIP, HCP, VP & ADP) patients! Connect with others who understand what you’re going through. In this session we’ll be exploring breathwork with host Scarlett.

For CEP patients and caregivers! Connect with others who understand what you’re going through. Hosted by Justin.

Join neurologist and porphyria expert Dr. Mohamed Kazamel for an informative webinar discussing the causes of chronic porphyria symptoms, which treatments are effective and strategies for managing symptoms day-to-day.

Join porphyria expert Dr. Amy Dickey to discuss when a transplant may be considered, what the process involves, potential risks and outcomes, and life after surgery. You’ll also hear directly from patients who have undergone transplantation as they share their personal experiences and perspectives. 

Dr. Bruce Wang, porphyria expert will be taking your questions live on Facebook.

This special meeting will be attended by the US Food and Drug Administration (FDA) and will highlight patient experiences to deepen knowledge and understanding of Congenital Erythropoietic Porphyria (CEP) and support the development of treatments for CEP.