The Regroupement québécois des maladies orphelines (Quebec Coalition of Orphan Diseases) welcomes the first Quebec Policy for Rare Diseases.

SHERBROOKE, QC, June 6, 2022 /CNW Telbec/ - The Regroupement québécois des maladies orphelines (RQMO) welcomes the unveiling of the Quebec policy for rare diseases by the Minister of Health and Social Services, Mr. Christian Dubé. Finally, there is recognition of the specific issues associated with this category of diseases. The obstacles encountered by patients with rare diseases are numerous. They are often "orphans" in our health network: orphans of a diagnosis, appropriate care, treatment, psychosocial support, etc.

The Policy unveiled today will make it possible to adapt our health network to better serve "rarity". We recognize in it the needs and priorities put forward by patients, parents, caregivers, and rare disease associations over many years and during the recent MSSS consultations, particularly the first axis "Awareness and training". Raising awareness of health professionals about the reality experienced by these patients, offering them appropriate training and mechanisms of knowledge transfer from "patient-experts" and expert doctors will guarantee the achievement of the second axis: facilitated and equitable access to diagnosis, care, and services. Finally, the RQMO applauds the objectives of the Policy regarding the promotion of research and innovation in the field of rare diseases.

"My son, Tommy, is 14 years old. He had health problems from birth, but it took 13 years before he got a diagnosis. With the measures announced in this policy, parents and adults will not wait as long to find out the name and cause of their illness. For my family, we are now pinning our hopes on research," reacted Ms. Caroline Joseph, mother of Tommy, who is affected by a rare and orphan disease.

"The Regroupement québécois des maladies orphelines very much welcomes this long-awaited Policy and now hopes that the Action Plan mentioned by the Minister will be developed quickly in partnership with all the stakeholders involved (patients, patient associations, physicians, other health professionals, researchers and representatives of the biotechnology and pharmaceutical industry)," says Ms. Gail Ouellette, president of the RQMO.

About the RQMO

The Regroupement québécois des maladies orphelines brings together thirty patient associations and many patients without an association. Its mission is to inform, educate and support all people, adults or children, affected by a rare disease and their caregivers, as well as health professionals via its iRARE Centre, an information and support center for rare diseases, a unique resource in Canada.

SOURCE Regroupement québécois des maladies orphelines

Ms Gail Ouellette, Président, Regroupement québécois des maladies orphelines, [email protected], www.rqmo.org