The Regroupement Québécois des Maladies Orphelines (RQMO) in Quebec, Canada supports individuals with all types of rare diseases by providing information, resources, and advocacy. In partnership with Genetic Alliance and the Luna platform, the RQMO developed a registry for all people in Quebec suffering from rare diseases (with or without diagnosis) and their caregivers. The registry is available online in French and English and allows individuals to register themselves. In the past, RQMO has partnered with organizations like Essais Cliniques Simplifiés (Clinical Trials Simplified) to accelerate the development of treatments for rare diseases.

Patient Involvement: Patients with rare diseases are involved with RQMO by receiving support and information, participating in advocacy efforts, and potentially connecting with others with similar conditions.

Initiatives: The iRARE Centre, operated by RQMO, provides information and support to individuals in Quebec with any rare disease, regardless of diagnosis.

For more information: https://rqmo.org/

Pubmed Search: https://pubmed.ncbi.nlm.nih.gov/24356209/