Canadian Association for Porphyria

Our Mission

The mission of the Canadian Association for Porphyria/Association Canadienne de Porphyrie is:
  • to promote health by providing individuals with porphyria access to related counselling, information, and group support programs.
  • to create and maintain a Canadian porphyria patient registry which will centralize information, and enable the provision of specialized information and services to the porphyria population.
  • to increase the medical profession’s and the public’s knowledge about porphyria through a website, seminars, presentations, educational booths, pamphlets, and information forums.

"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

News and Updates

The International Congress on Porphyrins and Porphyrias (ICPP) 2017 will be held in Bordeaux, France from June 25th to 28th, 2017.



Affiliates



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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