The mission of the Canadian Association for Porphyria/Association Canadienne de Porphyrie is:
News and Updates
New! Thanks to those of you who responded to our survey - Access to Heme Treatment in Canada
In order to better advocate on behalf of Canadians with porphyria, the Canadian Association for Porphyria/Association Canadienne de Porphyrie (CAP/ACP) asked Canadians who have been diagnosed with acute porphyria - Acute Intermittent Porphyria (AIP), Variegate Porphyria (VP), or Hereditary Coproporphyria (HCP) to take 5 - 10 minutes to complete a survey. We received 39 responses and are now reviewing this information. We now better understand how Canadian porphyria patients are able to access appropriate heme treatment and what that means to their quality of life. The results will be posted here soon.
New! Canadian Story
"Awareness for rare diseases such as erythropoietic protoporphyria could mean the world for people affected by them. Even if there is no cure available for my condition, I finally have a justification for my symptoms and a simple way to explain them to others without being judged in any way."
New! American Story
Porphyria J is a vlog devoted to creating community and awareness around Porphyria. Summer Shade is a 13 week series focused on living with erythropoietic protoporphyria (EPP) during the sunniest and hottest season.
Click here to watch Jason's video - Episode 1
The International Congress on Porphyrins and Porphyrias (ICPP) 2017 will be held in Bordeaux, France from June 25th to 28th, 2017.
"Patient self-organization is important for both mitigating uncertainty and driving progress toward improved treatments and outcomes for rare diseases."
How can I help?