RQMO's iRARE Centre
All Canadians can contact us for information on a rare disease.
Francophones canadiens hors Québec, vous pouvez nous contacter. See our page in French
Knowledge sharing is the very essence of the iRARE RQMO Centre. We have set ourselves the goal of being at the cutting edge of developments in the field of rare diseases and of making them accessible and understandable.
We offer a variety of services adapted to your needs, whether you are an individual suffering from a rare disease, a caregiver, an association, a health professional or any other person with a question regarding a rare disease.
The information is transmitted free of charge by bilingual professionals trained for this purpose.
Please note that we do not provide medical advice and we suggest that you discuss the information received with your healthcare team.
INFORMATION ON A RARE DISEASE
Have you, your child or a loved one just been diagnosed with a rare disease? Do you want to know everything about this disease? We can provide you with a resource sheet (see an example) which will contain:
- A short description of the disease
- Review articles and practice guidelines for medical management
- A list of experts or clinics specializing in the disease
- Patient associations
- Expert researchers and their research projects
- Ongoing clinical trials
- Orphan drugs in development and on the market.
Or if you have a specific question about the disease, we can research the answer for you.
The information collected comes from reliable, official and up-to-date sources. We can consult databases that you do not have access to through “Dr Google”.
Note: we respect the same confidentiality rules as in our health system.
Sources of information on rare diseases
If you want to search for yourself, check out our page with the main official sources of information on rare diseases and other useful information.
YOU DON’T HAVE A DIAGNOSIS?
INFORMATION ABOUT GENETICS AND HEREDITY
Eighty percent (80%) of rare diseases are of genetic origin. If you want information about the genetics and heredity of your disease, contact us. A genetic counselor or someone trained in medical genetics can give you basic genetic counseling about your disease or can answer your questions about genetic testing, possible risks to other members of your family, your options for reproduction, etc.
If necessary, we can refer you to a genetics service or clinic/laboratory to carry out a genetic test.
You are not sure that you understood the result of a genetic test or has it been a long time since you received the information? Contact us and we will revisit this information with you.
Caution: If you suspect that you have a genetic disease and want genetic testing, be cautious about genetic tests offered on the Internet (direct-to-consumer offers that do not require a doctor’s prescription). Most of these are not done in certified laboratories and are not good for making official medical diagnoses. The results of this type of test will not be taken into account in the public health system or will have to be confirmed by a certified laboratory.
If you are willing to pay for genetic testing, contact usfor advice. We will direct you to the right services.
EHLERS-DANLOS SYNDROME
Many people contact us because they suspect they have Ehlers-Danlos syndrome. Si vous habitez à l’extérieur du Québec, contactez le EDS Canada Foundation. For residents of Quebec, see our Ehlers-Danlos syndrome webpage.
NEED LISTENING, HELP, SUPPORT, RESOURCES?
We will find for you:
- Services in the health system
- Information on government programs and services
- Community resources near you (help for people with disabilities, support groups, respite, babysitting, financial assistance, etc.)
Our matching service
Would you like to be put in contact with an individual or family in Quebec who is dealing with the same rare disease as you or your child? Subscribe to our matching service. We can also find you people elsewhere in the world.
Our resource directory
See our directory of resources of all kinds for sick or disabled children and adults.
Our directory of patient associations and support groups
Find a community that knows your rare disease best and with whom you can connect. Consult ourDirectory of Rare Disease Associations and other useful groups in Quebec and elsewhere in Canada.
Our rare communities
The RQMO helps and supports certain groups of people who do not have an association. See the list of these rare communities.
