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! 

The CAP/ACP survey: Access to Heme Treatment in Canada 2016

Thank you to those who participated in the survey: Access to Heme Treatment in Canada. In order to better understand treatment for 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 which clearly demonstrated that there is unequal access to Normosang and/or Panhematin treatment across Canada. 

For those diagnosed with an acute porphyria and told by a physician that they should receive Normosang and/or Panhematin only 50% (8 of 16 patients) were able to access treatment. Although some patients receive timely treatment, half of them suffer through attacks, receiving only supportive care (medication for nausea and pain) in Emergency or as an inpatient as they are not able to receive Normosang and/or Panhematin treatment.

The CAP/ACP asserts that patients with acute porphyria should have access to Normosang and/or Panhematin treatment, as needed, regardless of where they live in Canada. We are advocating for a future where these blood products will be distributed efficiently and equitably, and by so doing, greatly improve the lives of those suffering from acute hepatic porphyria.

Click here for a copy: Access to Heme Treatment in Canada 2016 


The International Congress on Porphyrins and Porphyrias (ICPP) 2017 was held in Bordeaux, France from June 25th to 28th, 2017. Three board members from the Canadian Association for Porphyria/Association Canadienne de Porphyrie attended the congress. We will be sharing new information from the congress soon.


Affiliates

International Porphyria Patient Network





Supporters




How Can I Help?

"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


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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