RARE.Qc
The network to advance research on rare diseases in Quebec
Harnessing Quebec’s expertise in rare diseases
RARE.Qc is a new network of over 100 researchers, clinicians and patient partners across Quebec.
RARE.Qc is committed to achieving new standards of access to rare disease research data by creating a platform to harmonize existing databases and support new ones.
Some 690,000 people in Quebec have a rare disease.
Our vision
The complex nature of rare diseases and their rarity call for an evolution in the model of care. Rather than isolated approaches, a “network” model, integrating research at every stage of care, is essential to transform the trajectory of people living with a rare disease.
Meet the directors
Dr. Philippe Campeau
Co-Director
Sainte-Justine University Health Centre
Dr. Nicolas Pilon
Co-Director
Université du Québec à Montréal
Dr. Donald Vinh
Director
Research Institute of the McGill University Health Center
Dr. Geneviève Bernard
Co-Director
Research Institute of the McGill University Health Center
Michelle Canac-Marquis
Network Manager
Research Institute of the McGill University Health Center
People suffering from rare diseases have to wait an average of 8 years for appropriate help.
Get Involved
Get involved in RARE.Qc and participate in the co-creation of our network! We are currently looking for members to join our Governance Committees.
Thanks to our
partners and collaborators
