How we help
(Note: notre site web sera disponible en français bientôt).
Knowledge sharing is the very essence of the iRARE Centres. Our goal is to be at the cutting edge of developments in the field of rare diseases and to make them accessible and understandable. We offer a variety of services specific 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 trained professionals.
Please note:
- We do not provide medical advice and we suggest that you discuss the information received with your healthcare team.
- We respect your confidentiality. We do not share any information about you to a third party without your consent.
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 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 (see Research)
- Ongoing clinical trials
- Orphan drugs in development and on the market (see Treatments)
Or if you have a specific question about the disease, we can find the answer for you.
The information provided comes from reliable, official and up-to-date sources.
DON’T HAVE A DIAGNOSIS?
INFORMATION ABOUT GENETICS AND HEREDITY
Eighty percent (80%) of rare diseases are genetic. If you want information about the genetics and heredity of your disease, contact us. A genetic counsellor can answer your questions about genetic testing, possible risks to other members of your family, your options for family planning, etc.
If necessary, we can refer you to a genetics service or clinic/laboratory to carry out a genetic test.
Not sure that you understood the result of a genetic test or it has 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 wish to undergo 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, by law, cannot be used to make an official medical diagnosis. The results of this type of test are usually not taken seriously in the public health system and if there is a relevant result it will have to be confirmed by a certified laboratory.
However, it is possible to access genetic testing through certified laboratories or private clinics by paying yourself. If you cannot access a genetic service and are willing to pay for genetic testing, contact us for advice. We will direct you to the right services.
You can also access this testing if:
- A person has been diagnosed with a genetic disorder in your family and you wish to know if you are a carrier of this disorder.
- You are planning to have children and want to know if you and your partner are carriers of a genetic disorder.
Contact us for information on carrier testing.
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EHLERS-DANLOS SYNDROME OR DISORDERS OF HYPERMOBILITY
Many people contact us because they suspect they have Ehlers-Danlos syndrome. If you live outside of Quebec, contact the EDS Canada Foundation. For residents of Quebec, see the RQMO’s Ehlers-Danlos syndrome webpage.
NEED 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 your province who is dealing with the same rare or similar disease as you or your child? Subscribe to our matching service.
Our resource directories
Find various resources, services, and programs that could help you with multiple aspects of your life. Canada-wide or provincial/territorial resources.
Our directory of patient associations and support groups
Find a community that knows your rare disease best and with whom you can connect. Consult our Directory of Rare Disease Associations and other useful groups across Canada.
Do you want to search for information yourself?
Check out our page with the main official sources of information on rare diseases and other useful information.