Canadian Association for Porphyria

About Us

Our Story


The Canadian Association for Porphyria was founded in 2014 by a small group of patients, caregivers and their friends to provide Canadians with porphyria-related information, understanding and support.

The current Canadian Association for Porphyria has built upon the legacy of two earlier organizations which served Canadians for more than two decades:

    • Canadian Porphyria Foundation/Canadian Association for Porphyria, Inc, (1988-2011)
    • Alberta Porphyria Society (2011-2014)


    Our Mission

      1. Deliver evidence-based information and support to patients with porphyria, their families, health care providers and the general public across Canada; and

      2. Achieve standards and evidence-based comprehensive care for all people with porphyria throughout their life spans


      Charitable Organization Information


      Official Name: Canadian Association for Porphyria/Association Canadienne de Porphyrie

      Business Number/Registration Number: 81282 5735 RR0001

      Effective Date of Registration: March 6, 2014

      Designation: The Charity is designated as a Charitable Organization.


      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 and is not meant to substitute consultation from a recognized health professional. 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 about therapy according to the individual circumstances of each case.

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