Ehlers-Danlos syndromes and hypermobility
Why a page on Ehlers-Danlos syndromes and hypermobility?
The RQMO deals with all rare diseases. However, since the creation of our iRARE Centre, the condition for which we are most frequently contacted is Ehlers-Danlos syndrome (or hypermobility disorder). It is now estimated that “hypermobile type” Ehlers-Danlos syndrome (hEDS) and hypermobility spectrum disorders (HSD) affect approximately one in 500 people in the population.
PLEASE NOTE: As of September 2026, we can no longer provide individual assistance to people contacting us for information and resources regarding diagnosis and/or care for Ehlers-Danlos syndrome in Quebec.
For help, consult the document indicated at the right>>
Are you looking to get a diagnosis for a possible Ehlers-Danlos syndrome or for resources to help you?
Consult the following guide:
“Vous croyez être atteint.e du syndrome d’Ehlers-Danlos? Voici un guide pour vous et vos médecins.”
(English version available soon)
It contains:
- Information to help determine whether you might have hypermobile Ehlers-Danlos syndrome (the most common type), a hypermobility spectrum disorder, or a rare type of Ehlers-Danlos syndrome.
- The diagnostic criteria for hypermobile type of EDS.
- Medical services in Quebec for the diagnosis and care of EDS.
- Reliable sources of information.
- Information on genetic testing.
Share this guide with your doctors!
The only official association for the Ehlers-Danlos syndromes in Canada is the EDS Canada Foundation. Visit their website for resources. If you speak English, you might benefit from their “Wellness Sessions” and “Virtual Support Groups.”
The Foundation is working to offer their services in French also.
Joint hypermobility: what is it and is it serious?
Watch this video (French)
The RQMO, in partnership with the EDS Canada Foundation, produced a documentary film about Ehlers-Danlos syndrome. It was released in May 2026 and is available on YouTube (French with English subtitles).
Ehlers-Danlos syndrome genetic and molecular research project
The hEDS*omics program is a large-scale multicenter research initiative in Quebec focusing on hypermobile Ehlers-Danlos syndrome (hEDS) and hypermobility spectrum disorders (HDS).
The program’s mission is to transform the understanding and management of SEDh and DSH by integrating molecular data with clinical, lifestyle and environmental information.
This project is based at the McGill Genome Centre of McGill University’s Department of Human Genetics. RQMO is collaborating on this research project.
For the time being, patients are being recruited through physicians at university centers (MUHC, CHUM, CHU Ste-Justine and CHUL).
For more information: https://www.mcgill.ca/hypermobile-eds-omics-research/
Our steps for the recognition of EDS in Quebec
The RQMO has made several representations to various Ministers of Health to plead for recognition of the particular difficulties experienced by people with EDS and their families (lack of diagnosis and care). We have also provided statistics which demonstrate that hypermobile type EDS and hypermobility spectrum disorders are more common than estimated and therefore warrant special attention.
We are continuing our efforts, just as we do for all rare diseases. We are also collaborating with the EDS Canada Foundation to bring about change across Canada.
A petition concerning EDS was published on the website of the Quebec National Assembly. The filing of this petition by the MNA, Mr André Fortin, was made on May 23, 2023.
Watch the video (Facebook)
Response to the petition from the Minister of Health and Social Services, Mr. Christian Dubé.