Meetings & Events

Filtering by: “What's UP Doc”

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

Past Events

Featured
Molecules to Medicine: The Science of Porphyria
Jun 21
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
Jun 6
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
May 18
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!
May 17
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!

Sun Escape 2025
May 1
Sun Escape 2025

Join us for a weekend of ALL FUN and NO SUN with the whole family!

Light Protection and Porphyria
Apr 12
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
Mar 22
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
Jan 11
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
Nov 2
What’s UP Doc? Live with Dr. Bruce Wang

Recording available! Dr. Bruce Wang took your questions live on Facebook.

PorphyriaPalooza
Sep 13
PorphyriaPalooza

Our porphyria community came together for an incredible weekend of connection, celebration and learning!

Nutrition and Lifestyle in Porphyria- Recording Available
Jul 20
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
Jul 13
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.