Quebec Coalition of Orphan Diseases

Ehlers-Danlos syndrome (EDS) is a group of inherited connective tissue diseases. It is a disease that is not as rare as we thought, but is very poorly known and under-diagnosed.

It is not as simple as we thought it to be: it is a disease that affects many organs and systems and is accompanied by multiple symptoms and chronic pain.

Its management is complex, but there is little expertise in the health system in Quebec.

This is the disease for which people most frequently contact the iRARE CENTRE of the Quebec Coalition of Orphan Diseases/Regroupement québécois des maladies orphelines (RQMO).

THAT IS WHY WE WANT TO ORGANIZE THIS FIRST EDS EDUCATIONAL DAY IN QUEBEC IN 2020.

To invite doctors and health professionals who know the disease and can help patients and caregivers better understand and manage it. It will also be an opportunity for the patients to meet and exchange their experiences and advice. And to share their needs and priorities with the health professionals.