Meetings & Events
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.
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!
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!
Partner and Community Events
Discover GIVLAARI® (givosiran): A Treatment for Adults with Acute Hepatic Porphyria (AHP)
Join us for Discover GIVLAARI, an educational event, presented by an Alnylam Patient Education Liaison (PEL), that will help you better understand AHP and how GIVLAARI may help. Learn about how patients prescribed GIVLAARI get started and hear from a patient who is taking GIVLAARI.
June 21st, 2025
Host/PEL & Patient: Kim Bischel & Hannah
12:00 – 2:00 PM ET
Old Vinings Inn (3011 Paces Mill Road SE, Atlanta, GA 30339)
