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.

Join Ironman athlete and AIP patient Lauren Thompson for a discussion on staying active when you have porphyria. We'll be sharing strategies on nutrition, listening to your body and more.

You’re invited to the Porphyria Palooza Reunion- a fun-filled virtual gathering for the porphyria community where you can come together to connect, laugh and play!  

Join Porphyria Expert, John Phillips, PhD and fellow porphyria patient Lina Rebeiz as we delve into the science behind porphyria.

Recording Available! 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. 

Join us for Global Porphyria Day, a worldwide day of porphyria advocacy and awareness!

Dr. Bruce Wang, porphyria expert took your questions live on Facebook for Global Porphyria Day!

Recording Available! Join Dr. Amy Dickey and EPP Patient Ginger Gonsalves for a deep dive into protecting yourself from light when you have porphyria.

Recording Available! Join Dr. Sioban Keel for an informative webinar of treatment options for the acute hepatic porphyria (AIP, HCP and VP).

Recording Available! Dr. Rebecca Karp Leaf dives into all things reproductive health and porphyria!

Recording available! Dr. Bruce Wang took your questions live on Facebook.

Recording available! Nutritionist and AIP patient Isabel Palazon joined us to discuss lifestyle and nutrition strategies to help manage your porphyria!

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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.

Join us for a special discussion based on based on Kalyn Shelton's memoir, I'm Not Always Me: Living with Porphyria.

Recording available! Dr. Amy Dickey took your questions live on Facebook.