Directory of patient organizations

Below is a list of Canadian rare disease organizations for specific rare diseases and other relevant organizations.

If you are a Canadian organization and want to be included in this directory, please contact us.

  • If you don’t find an organization for your disease, contact us or use our Matching service to find someone in Canada with the same or similar disease. (Note: we used the most common name for the disease, but it may be known under other names)
  • If an organization has a website in French, it is indicated (français).

To find international rare disease organizations, check the directories of the National Organization for Rare Diseases, Genetic Alliance, and Orphanet.

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