RQMO's Rare Communities
Our support program for people “without an association” or “without a diagnosis”
The RQMO brings together individuals affected by rare diseases in Quebec, for whom a dedicated association is absent. These are our “Rare Communities”. Our goal is to provide them with the necessary support by creating a safe space where they can share their experiences, concerns, advice and journeys. Through our regular virtual meetings, known as “Cafés rencontres rares” (Rare Café Meetings), we collaborate to define future projects and discuss shared challenges. Experts, such as specialized doctors or healthcare professionals, are regularly invited to present webinars on specific topics.
In addition, we have made a tool available to these communities: a platform where they can share articles, videos, participate in discussions and discuss everything related to their rare disease. This platform aims to strengthen the connection between members and create a collaborative space for deeper information sharing, breaking the isolation these individuals may feel.
These are our active “Rare Communities”:
- Biliary atresia
- Stickler syndrome
- Smith Magenis syndrome
- Adrenal diseases
- DiGeorge syndrome
- Stiff person syndrome
- Without a diagnosis
To join one of these communities, contact us. (Only for Quebec residents)
TO FIND OTHER PEOPLE OR COMMUNITIES
If you want to get in touch with other people in Quebec who have the same rare disease (or similar disease)
To find a rare disease association in Quebec or elsewhere in Canada, consult our directory
To discuss all kinds of subjects in complete confidentiality, whatever the disease, join the private Quebec Facebook group.
