Join the UPA and a panel of knowledgeable health care professionals to learn about your porphyria, treatment options, navigating care and more!

Join porphyria experts Dr. Manisha Balwani of Mount Sinai and Hetanshi Naik, for a conversation about the new acute porphyria guidelines and what patients and families should know.

Monthly| Living with porphyria can already feel isolating. For LGBTQIA+ individuals, it can be especially meaningful to connect in a space where both health and identity are met with care and understanding. Hosted by Elsie, Tommy and Ollie.

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

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

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

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.

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

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.

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. 

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.

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!

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!

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.

Recordings available! Leading porphyria experts shared the latest porphyria care recommendations and research.