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.
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.
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.
Porphyria Palooza Reunion (Online)!
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!
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!
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.
External Partner Events
Discover GIVLAARI: September 13, 2025
Hosted by Alnylam Pharmaceuticals, this lunch event will provide information on acute hepatic porphyrias (includes AIP, HCP and VP), the AHP treatment GIVLAARI and how it works, and have a Q&A session.
Program Details:
When: 9.13.2025 at 12:00pm.
Where: Old Vinings Inn 3011 Paces Mill Road SE, Atlanta, GA. Lunch will be provided.
Host: Kim (Alnylam Patient Education Liaison)
Speaker: Hannah (Alnylam Patient Ambassador Taking GIVLAARI)
Individuals can register here or call 1-833-200-9262.
More details are available here.