Rare Diseases: Where to go for more information

Locating information and resources on rare diseases can often be challenging, as these conditions do not attract as much attention or visibility as more common illnesses do. If you or a loved one are affected by one of the 6,000–8,000 known rare diseases, you may find the information and resources below helpful.

Provincial health organizations are a good source for information and support on rare diseases. See for example British Columbia’s Rare Diseases Foundation.

Provincial health plans help cover the costs of treatment for rare conditions. Refer to your Provincial or Territorial Guide for health plan contact information. For example, Alberta has a prescription drug coverage program for select rare diseases.

Support groups can be an excellent resource for information on specific conditions, as well as for support from people going through the same experience. The Canadian Organization for Rare Disorders is a network for organizations that seeks to represent and advocate for Canadians with rare disorders. You can also find community support groups for a number of rare conditions using the community support group database on this website.

Online databases can be useful search tools too. You can search on the National Organization for Rare Disorders and the Genetic and Rare Diseases Information Center (U.S. resource) websites for information and articles on rare conditions.

Key Websites:

• Canadian Organization for Rare Disorders
• National Organization for Rare Disorders (U.S. resource)

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