Directory of patient organizations

Below is a list of Canadian rare disease patient organizations and some other relevant organizations.

To find other patient organizations across the world, consult the websites of the National Organization for Rare Diseases, Genetic Alliance, and Orphanet.

  • If you don’t find an organization for your disease, see our Matching service.
  • If you are a Canadian organization and want to be included in this directory, please contact us.
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