The Minister of Health and Social Services, Christian Dubé, accompanied by his parliamentary assistant, Marilyne Picard, has announced the establishment of the first Quebec policy for rare diseases. This aims to optimize the accessibility of quality health care and services that are safe, fair, inclusive and adapted to the specific needs of patients with rare diseases and their families.

“The lack of knowledge we have of rare diseases in the medical community leads to many challenges in terms of accessibility for those affected and their families. Through this policy, which is a first in Quebec and Canada, our government is committed to providing better access to diagnosis and treatment, as well as to providing patients with reliable information on the disease or support. I want to change things in a lasting way, with the support of our teams across the network.”

Christian Dubé, Minister of Health and Social Services

The policy, which was the subject of a consultation process mobilizing 24 rare disease organizations as well as other organizations specialized in this sector, is based on three main axes. This involves raising awareness and training, in particular for health professionals, for easier and equitable access to diagnosis, care and services, as well as the promotion of research, innovation and of data collection.

Quebec recognizes the timely need for a rare disease policy to help rare disease patients gain better access to diagnosis and treatment. Defeat Duchenne Canada will continue our efforts working with CORD (Canadian Organization of Rare Disorders), Government bodies and other patient groups, to advocate for a national rare disease policy and access to medicines for all Canadian Duchenne patients.

Learn more about our advocacy work here and click the button below to read the full press release.