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.

April 26th, 2025
Host/PEL & Patient: Lara Hervias & Donna

  • 12:30 – 2:30 PM ET

  • Saté (694 Town Center Drive, Newport News, VA 23606)

  • Register Here

May 13th, 2025
Host/PEL & Patient: Kim Bischel & Hannah

 

June 21st, 2025
Host/PEL & Patient: Kim Bischel & Hannah

Past Events

Featured
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.

"I'm Not Always Me": A Conversation
Jun 15
"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
May 11
What’s UP Doc? Live with Dr. Amy Dickey

Recording available! Dr. Amy Dickey took your questions live on Facebook.

Sun Escape 2024
May 3
Sun Escape 2024

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

What’s UP Doc? Live with Dr. Bruce Wang
Feb 24
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
Oct 29
Patient Day at the International Porphyrias Symposium 2023

Recordings available! Leading porphyria experts shared the latest porphyria care recommendations and research.