The Regroupement québécois des Maladies Orphanes (RQMO) is delighted with the unveiling of the Quebec Policy for Rare Diseases by the Minister of Health and Social Services Christian Dubé.
The latter believes that this Policy will make it possible to adapt the health network to better serve patients with rare diseases, nicknamed “orphans”: orphans of a diagnosis, appropriate care, treatment, psychosocial support, etc.
“My son, Tommy, 14, had health problems from birth, but it took 13 years before he got a diagnosis, reacts Caroline Joseph, mother of Tommy, suffering from a rare and orphan disease . With the measures announced in this policy, parents and adults will wait less time to find out the name and cause of their illness.”
The RQMO notes that the needs and priorities put forward by all the people consulted have been listened to, particularly in the first area Awareness and training.
Sensitizing health professionals to the reality experienced by these people, their appropriate training and a process of knowledge transfer from “patient-experts” would be the key, according to the group.
The RQMO applauds the objectives of the Policy regarding the promotion of research and innovation in the field of rare diseases.
“The group warmly welcomes this long-awaited Policy from the community affected by rare diseases and now hopes that the Action Plan mentioned by the Minister will be developed quickly in partnership with all the stakeholders involved,” says Gail Ouellette, President of the RQMO.
(J.B./IJL)