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Prendre soin des personnes atteintes de maladies rares

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Prendre soin des personnes atteintes de maladies rares

Au début des années 2000, Gail Ouellette a été touchée par l’histoire d’une famille dont la petite fille souffrait d’une maladie osseuse très rare. En tant que conseillère génétique, son rôle était d’éduquer les gens sur les maladies. Dans le cas de cette petite fille, atteinte d’une maladie au nom compliqué, ses recherches ne lui permirent de trouver que très peu d’information à partager avec la famille.
Tout au long de ses années de pratique, elle se rendit compte que la plupart des personnes atteintes d’une maladie rare étaient seules dans leur combat, et n’avaient accès qu’à très peu de ressources, surtout en français. Elle réalisa également qu’en France, à cette époque, les maladies rares étaient déjà reconnues et qu’un plan national était en cours d’élaboration. Elle rêvait de réaliser les mêmes avancées au Québec.

Seul avec son diagnostic

Dotée d’une connaissance approfondie des besoins des familles, Gail a lancé, il y a 10 ans, le Regroupement Québécois des Maladies Orphelines (RQMO). L’organisation a pour mission d’informer et de soutenir les familles, à travers son Centre iRARE. Elle sensibilise aux maladies rares et plaide pour que le Québec et le Canada instaurent une stratégie nationale concernant les maladies rares.

Le seul pays industrialisé sans plan

Le Canada n’a toujours pas de stratégie nationale concernant les maladies rares. Par conséquent, de nombreux patients et soignants ne disposent pas d’information adéquate sur leur maladie rare et doivent subir des retards de diagnostic, des soins de moindre efficacité, une absence d’accès aux traitements et des difficultés à obtenir des services sociaux. Le Canada doit adopter une stratégie nationale et demander aux provinces d’adapter leurs systèmes de santé respectifs pour répondre aux besoins non satisfaits des personnes atteintes de maladies rares. Toutes les provinces devraient collaborer ensemble pour partager les connaissances, les ressources et l’expertise afin de mieux servir cette population de patients.

“Il est triste de savoir que le Canada est le seul pays industrialisé sans une stratégie concernant les maladies rares en 2020.” – Gail Ouellette, Présidente, RQMO.

ENSEMBLE, FAISONS LE PREMIER PAS. SIGNEZ NOTRE PÉTITION!

Trois millions de personnes, soit 1 Canadien sur 12, principalement des enfants, souffrent de maladies rares. Collectivement, ils ne sont pas si rares. Un plan national reconnaîtrait les maladies rares comme une catégorie de maladies avec des besoins spécifiques dans le système de santé. Il stimulerait la recherche, le développement et l’accès aux nouveaux traitements. Il entraînerait une amélioration des retards de diagnostic et de la qualité des soins.

Aidez-nous en plaidant en faveur d’une stratégie nationale concernant les maladies rares.

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