You live in another Canadian province than Quebec?

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We can give you any information you want on any rare disease (guidelines for management and treatment, experts of the disease, patient organizations, research projects, clinical trials, therapies in development or on the market, etc.). You can also ask for our “Matching service”: we can search for other Canadian(s) with the same or similar disease as yours.


Information and resources on any rare disease

Write us :   info(at)


Telephone: (514) 987-5539 (Montreal)  (You can call and we will call you back if you have long-distance fees; we will soon get a toll-free number for Canada)


We will search for you :

  1. description of the disease in lay terms;
  2. official sources of information for recommended medical management and treatment;
  3. physicians, researchers or clinics specialized in the disease;
  4. patient organizations;
  5. research projects;
  6. clinical trials;
  7. orphan drugs.

The information is transmitted by health professionals or competent trained personnel.

We do not give medical advice and we suggest that you discuss the information with your doctors.


Matching service

If you want, we can put you in contact with another person or family with the same or similar disease.


Yourself or a family member is affected by a genetic disease and you have questions?

We can refer you to a Genetics service near you.


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