The RQMO salutes Minister McCann's leadership in announcing the creation of an Advisory Committee and forums on rare diseases and orphan drugs

MONTREAL, Feb. 29, 2020 /CNW Telbec/ - This year's Rare Disease Day, February 29, coincides with the 10th anniversary of the Regroupement québécois des maladies orphelines. To mark the occasion, RQMO held a RARE event today, sponsored by CHU Sainte-Justine Research Center.

The event brought together patients, caregivers, researchers and clinicians to review the progress made over the last ten years in this area and to discuss the future outlook for the estimated 500,000 people in Quebec living with a rare disease.

"Our government is very sensitive to the plight of people living with a rare disease and their loved ones. We heard their heart-felt cries and several concrete actions have been undertaken, and will continue to be taken, in order to better meet their needs," said Danielle McCann, Minister of Health and Social Services. "I would like to highlight the extraordinary work accomplished by the Regroupement québécois des maladies orphelines over the past decade. Their contribution is invaluable"

"For the past ten years, the RQMO has taken up the challenge of raising awareness among the general public, the medical community and the government that rare and orphan diseases are a category of diseases with specific needs," said Gail Ouellette, President and Founder of the RQMO.

To launch the event, Ms. Marilyne Picard, Member of Parliament for Soulanges, Parliamentary Assistant to the Minister (MSSS) announced the establishment of an Advisory Committee on rare diseases. The first meeting will take place in April.

Patient support associations and groups will be consulted through advisory forums, and a specific subcommittee will be created to address access to medicines dedicated to the treatment of rare and orphan diseases. Advisory forums are planned for citizen and entrepreneurial consultation in connection with the medication component.

"We are proud to sponsor this event and to help raise public awareness of the cause of rare diseases," said Dr. Jacques L. Michaud, director of the CHU Sainte-Justine Research Center. It should be noted that the research teams at CHU Sainte-Justine have identified the genetic cause of some 40 rare diseases and are working to develop therapies for some of them.

SOURCE Regroupement québécois des maladies orphelines

Media Relations: Lise Huneault, Alice Relations Publiques - Advocacy Solutions, C. 514 245-9789, [email protected]