WELCOME TO RQMO/ Quebec Coalition of Orphan Diseases
Orphan Diseases
Not so rare, 700,000 Quebecers affected
Activities
RQMO 2026 Education Day
This year, RQMO’s Education Day will be held at the Travelodge Hotel in Quebec City (3125, boulevard Hochelaga, Quebec), with the theme “The impact of rare diseases – towards greater inclusion”.
This awareness-raising day is intended as a forum for exchange, reflection and sharing about the realities experienced by people with rare diseases. We want to highlight the day-to-day challenges, as well as concrete ways of building a more inclusive society.
Over the course of the day, several dimensions will be addressed, including social impacts related to schooling, employment, mental health and financial realities. We will also explore the physical repercussions, both visible and invisible, and their influence on social participation and quality of life.
Testimonials from those directly concerned will enrich these discussions, bringing a human, authentic and essential perspective to these issues.
By bringing together different points of view, this day aims to better understand the impact of rare diseases and to encourage concrete action in favor of fairer, more sustainable inclusion.
A Canadian documentary on Ehlers-Danlos syndromes
May is Ehlers-Danlos Syndrome Awareness Month:
PREMIERE of the documentary film ” Une VRAIE maladie DITE imaginaire ” – BOOK THE DATE!
Presented Thursday, May 28 at 3pm in Montreal, as well as virtually. Follow us on our social networks for more details, registration will open soon.
A Canadian documentary film on Ehlers-Danlos syndromes produced by the Regroupement québécois des maladies orphelines and directed by Gail Ouellette, PhD, genetic counsellor at RQMO. With the collaboration of the EDS Canada Foundation.
This film gives a voice to patients, healthcare professionals and support organizations, highlighting the persistent lack of recognition of Ehlers-Danlos syndrome in Quebec, as well as in the rest of Canada.
The documentary will be available online after the premiere on May 28.
RQMO on the move
Gardening workshop: seed bombs and cuttings
On Saturday, May 2, 2026, RQMO, in collaboration with horticulturist Catherine Francis, organized a gardening workshop. It was a wonderful experience, full of smiles and wonderful encounters.
RQMO’s presence at CHU Sainte-Justine
On April 30, RQMO held an information booth at CHU Sainte-Justine to raise public awareness of rare diseases. This initiative raised awareness of our organization and the services we offer, particularly in terms of support and information.
We look forward to seeing you there again on June 18.
CONTACT OUR iRARE CENTER FOR PERSONALIZED HELP FOR YOURSELF, YOUR CHILD OR A RELATIVE. FREE, BILINGUAL SERVICE OFFERED BY A PROFESSIONAL
You have just learned about everything that the RQMO does for people with rare diseases and their families.
Help us continue to help them.
You’ll find announcements of activities and news about rare diseases (research projects, clinical trials, new drugs, etc.). Maybe even someone with the same rare disease as you!