The Future of Porphyria
LINK UP WITH DR. WANG

Do you have questions relating to your porphyria?

Dr. Bruce Wang (Porphyria Expert, UCSF) is an absolute ROCK STAR in the porphyrias. He is known for responding to rapid-fire questions with his incredible knowledge and skill about all porphyrias - including from those still seeking diagnosis. Patients who have been to his clinic attest to his expertise and patience.

JOIN US on April 2nd at 4pm Eastern/1pm Pacific. Everyone around the world is welcome.
IT'S A SIGN! PORPHYRIA AWARENESS WEEK IS COMING!

This Porphyria Awareness Week, snap a photo with our #PorphyriaTogether sign to help spread awareness!
We can't wait to see all of your great pics!

Send your photos to info@porphyria.org
"TWO OF ME" DOCUMENTARY


Alnylam’s new documentary, Two of Me: Living with Porphyria, will be available for streaming on The Disorder Channel via Roku or Amazon Fire TV at the start of Porphyria Awareness Week on April 2, 2022. Directed by Emmy-nominated filmmaker Cynthia Lowen and developed in collaboration with the AHP community, Two of Me: Living with Porphyria chronicles the lives of seven people around the world living with acute hepatic porphyria (AHP) and is a story of human strength, perseverance and survival, aimed at shortening the ~15 years it can take to diagnose AHP. 

Interested in hosting a screening of the documentary to help raise awareness? Alnylam developed the attached discussion guide and screening toolkit that you may use or share. This resource includes links to download key materials, information about the documentary, tips for hosting a screening event, key quotes from the film, suggested discussion questions, and more.
DO YOU LOVE POPCORN?
DO YOU WANT TO HELP FUNDRAISE?

The United Porphyrias Association has a fun new fundraiser taking place April 2nd-6th for Porphyria Awareness Week!

Click the link below to participate and share the link with friends and family!
PORPHYRIA AWARENESS WEEK 2022


GLOBAL AWARENESS EFFORT


Get out your PURPLE and prep for Porphyria Awareness Week – April 2-9, 2022!