Our mission
This research network aims to complement the clinical roadmap developed by the Comité consultatif québécois pour les maladies rares (CCQMR) for the MSSS, by harnessing the expertise of all Quebec centers and developing a provincial network to foster peer-to-peer learning and the sharing of knowledge, resources and capabilities to strengthen healthcare systems for rare diseases. Ultimately, this network will make Quebec a beacon of innovation in the field of rare diseases.
Objective
To promote and facilitate collaborative research on rare diseases in Quebec, in order to foster scientific innovation and statistical clarity on the burden that rare diseases represent for the Quebec population.
Strategic alignment to Quebec’s priorities
In June 2022, Quebec’s Health Minister (MSSS) published their policy on rare diseases, comprising 3 axes: While Axis 1 (Awareness and training) and Axis 2 (Facilitated and equitable access to diagnosis, care and services) are aligned with the health care purview of the MSSS, Axis 3 (Promotion of research, innovation and data collection) requires rare disease specific research expertise, experience and infrastructure. RARE.Qc specifically addresses this latter need, by unifying the expertise of all of Quebec’s rare disease specialists and developing a provincial rare disease network to define the epidemiology of rare diseases in Quebec, share rare disease specific data, resources, and capacities, and foster the capacity for trans-disciplinary and multi-institutional transformative research.