The Rare Bleeding Disorders Network

Survey on rare disease management and digital health

The Quebec Association for Rare Diseases (Regroupement Québécois des Maladies Orphelines, RQMO) is conducting a survey in collaboration with a research group at the University of Sherbrooke to better understand how digital health technologies are used by people living with a rare disease and their families to assist in the management of their condition. The survey is open to individuals aged 14 and older who are affected by at least one rare disease, or who are caregivers of an individual affected by at least one rare disease. The survey will take approximately 20 minutes to complete, and can be found here.