Meetings & Events
International Porphyrias Symposium 2025
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.
Patient & Family Weekend at IPS 2025
Connect with your “Porphamily” for a weekend of connection, celebration and science!
CEP Patient-Focused Drug Development Meeting
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.
Mind, Body and Nerves: Daily Life with Acute Hepatic Porphyrias
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.
Connect UP! Staying fit with porphyria
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.
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.
Navigating Porphyria Treatment Costs: How HealthWell Can Help
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.
Global Porphyria Day 2025
Join us for Global Porphyria Day, a worldwide day of porphyria advocacy and awareness!
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!
PorphyriaPalooza
Our porphyria community came together for an incredible weekend of connection, celebration and learning!
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.
Patient Day at the International Porphyrias Symposium 2023
Recordings available! Leading porphyria experts shared the latest porphyria care recommendations and research.
