Canadian Association for Porphyria

Our Mission

The mission of the Canadian Association for Porphyria/Association Canadienne de Porphyrie is:
  • to deliver evidence-based information and support to patients with porphyria, their families, health care providers and the general public across Canada
  • to achieve standards and evidence-based comprehensive care for all people with porphyria throughout their lifespans.

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."

Click here to read Jean-Baptiste's story

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.



Affiliates

International Porphyria Patient Network





Supporters



"Patient self-organization is important for both mitigating uncertainty and driving progress toward improved treatments and outcomes for rare diseases."

Sara D. Khangura, et al., July 2015

How can I help?

Medical Disclaimer

Care has been taken to ensure that the information on this website is accurate at the time of publication. This information is, however, intended for general guidance only. The Canadian Association for Porphyria/Association Canadienne de Porphyrie disclaims for itself and for the author of this information, all responsibility for any mis-statements or for consequences of actions taken by any person while acting on information contained herein. Physicians and patients must make their own decisions according to the individual circumstances of each case.

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