Rare Disease Information and Support Centre

Pour le français cliquez ici 



For other Canadian provinces – See below


Information on any rare disease, resources and support

Telephone :

Montreal : (514) 987-5539
Toll free : 1-888-987-5539

Email :  info(at)

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.


Government and community resources

We will find government or community resources to help you with:

  • medical services;
  • support for handicapped children or adults;
  • financial or legal help;
  • respite and home care;
  • psychosocial support;
  • etc.

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?

At our Rare Disease Information and Resource Centre, a genetic counsellor can offer you basic genetic counselling for your disease and answer your questions about genetic tests, possible risks for your family members, prenatal diagnosis or other options, etc.

You do not have a diagnosis?

You can still contact us and we will try to direct you to the appropriate medical services or specialties.


You are from another Canadian province than Quebec?

You are welcome to contact us.

Write to:  info(at)  or call our toll-free number   1-888-987-5539

However, due to our resources we can only offer these services :

  • Any type of information on any rare disease (see above « We will search for you »)
  • Matching service
  • Finding a genetics service near you