RQMO's iRARE Centre
Knowledge sharing is the very essence of the RQMO’s iRARE 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
You, your child, or a loved one have just been diagnosed with a rare disease and 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 in lay terms
- Patient organizations and support groups
- Review articles and practice guidelines
- A list of experts or clinics specializing in the disease
- Ongoing research across the world
- Ongoing clinical trials
- Orphan drugs in development and on the market.
Or if you have a very specific question about the disease, we can find the information 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”.
Sources of information on rare diseases
If you want to search for information yourself, check out our directory of the main official sources of information on rare diseases and other useful information.
INFORMATION ON GENETICS AND HEREDITY
Approximately 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.
If it has been a long time since you had genetic counselling or you are not sure that you understand the results of your genetic test, contact us, and will revisit this information with you.
Warning: if you suspect that you have a genetic disease and want genetic testing, be careful about genetic testing offered on the internet (direct-to-consumer offers that don’t require a doctor’s prescription). Most of these are not certified laboratories and are not appropriate for a genetic diagnosis. The results from this type of testing will not be taken into consideration in the public health system or tests will have to be redone.
If you are willing to pay for genetic testing, contact us. We will direct you to the right services.
EHLERS-DANLOS SYNDROME
Many people contact us because they suspect being affected by a type of Ehlers-Danlos syndrome. If you live outside of Quebec, contact the ILC Foundation/Ehlers-Danlos Syndrome. For Quebec residents, consult our web page on Ehlers-Danlos syndrome.
NEED HELP, SUPPORT, OR RESOURCES?
We will find for you:
- Services in the health system
- Informations on government programs and services
- Community resources near you (help for adults and children with handicaps, respite, financial aid, etc.)
Our “matching” service
You would like to be put in contact with an individual or family who has the same rare disease as yourself or your child and lives in Canada? Contact us at info@rqmo.org.
Our directory of patient organizations and support groups
Find a community that knows your rare disease best and with whom you can connect. Consult our directory of rare disease patient organizations and other support groups in Canada.
