Quebec deployed the first policy for rare diseases

Ignorance of these diseases in the medical community complicates, even delays, the acquisition of diagnosis and treatment.

Our government is committed to providing better access to diagnosis and treatment, as well as making reliable disease information or support available to patients.written by the Minister of Health, Christian Dubé.

Up to 80% of rare diseases are genetic. These pathologies include autoimmune, infectious, toxic, malformative diseases and rare cancers, among others.

They affected one person in 2000. Half of those affected were children.

In Quebec, for example, the effects of establishment, such as the colonization of France, had a particular impact on some particular regions and for some particular populations, specifically in Charlevoix and Saguenay-Lac-Saint-Jean. First Nations and Inuit were also affected.

Cyclist Pierre Lavoie, who has been fighting for several years for the recognition of rare diseases, was particularly delighted Monday morning when he heard Minister Dubé’s announcement.

The orphans have just found a foster family. That’s simple. Now we are no longer alonehe told host Julie Drolet, ICI RDI.

Pierre Lavoie, whose two children have died of lactic acidosis, a hereditary disease primarily in Saguenay-Lac-Saint-Jean, is well placed to identify the barriers faced by parents of children with rare disease.

More importantly, there is a lack of information from front-line physicians. The parent came to the emergency room and there, the disaster came. The biggest problem, I saw, was the ignorance of the medical world on orphan diseases in Quebeche said.

Pierre Lavoie also recalled that his Grand Défi of 1000 kilometers by bicycle will take place next weekend. All funds go to orphan diseases, so cyclists don’t pedal in vainunderlined the athlete.

The policy, which plans to establish a register of patients with rare diseases, will also promote basic and clinical research.