Meetings & Events
Light Protection and Porphyria
Join Dr. Amy Dickey and EPP Patient Ginger Gonsalves for a deep dive into protecting yourself from light when you have porphyria.
Global Porphyria Day 2025
Join us for Global Porphyria Day, a worldwide day of porphyria advocacy and awareness!
International Porphyrias Symposium 2025
Save the Date! 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.
Treatment Options and Acute Hepatic Porphyrias
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.