{"id":4613,"date":"2024-07-22T23:21:37","date_gmt":"2024-07-22T23:21:37","guid":{"rendered":"https:\/\/irarecentres.org\/mission\/"},"modified":"2025-01-23T23:24:57","modified_gmt":"2025-01-23T23:24:57","slug":"mission","status":"publish","type":"page","link":"https:\/\/irarecentres.org\/fr\/mission\/","title":{"rendered":"Mission"},"content":{"rendered":"\t\t
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Mission - Histoire - \u00c9quipe<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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Mission des centres iRARE canadiens
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La mission des centres iRARE canadiens est d’am\u00e9liorer la vie des Canadiens atteints d’une maladie rare en les informant et en les soutenant, ainsi que leurs proches aidants, leurs familles et leurs professionnels de la sant\u00e9.<\/p>\n

Les centres iRARE canadiens offrent les services suivants :<\/p>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t

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Historique<\/strong><\/h3>\n

Le premier centre iRARE (centre d’information et de soutien sur les maladies rares) a \u00e9t\u00e9 cr\u00e9\u00e9 au Qu\u00e9bec par le Regroupement qu\u00e9b\u00e9cois desmaladies orphelines<\/a>(RQMO). Depuis 2010, il a aid\u00e9 des milliers de Qu\u00e9b\u00e9cois touch\u00e9s par une maladie rare. Il s’agit du seul service de ce type au Canada. <\/p>\n

Gail Ouellette, cofondatrice du RQMO, r\u00eavait de cr\u00e9er des centres iRARE dans d’autres provinces canadiennes. Les \u00c9tats-Unis et la plupart des pays de l’Union europ\u00e9enne disposent d’organisations offrant un tel service. <\/p>\n

En 2023, le RQMO a obtenu un financement d’une dur\u00e9e d’un an de la part du gouvernement f\u00e9d\u00e9ral par le biais de son \u00ab\u00a0Fonds de relance des services communautaires\u00a0\u00bb (g\u00e9r\u00e9 par Centraide Canada) pour mettre en place une plateforme permettant de centraliser les informations et les ressources n\u00e9cessaires \u00e0 un service pancanadien.<\/p>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t

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Le premier Centre iRARE canadien a \u00e9t\u00e9 lanc\u00e9 en juin 2024 avec l’embauche d’une agente d’information qui peut r\u00e9pondre aux demandes concernant toute maladie rare \u00e9manant de Canadiens hors du Qu\u00e9bec. En ao\u00fbt 2024, en partenariat avec CanPKU+<\/a> (une organisation pancanadienne pour la ph\u00e9nylc\u00e9tonurie et d’autres troubles connexes), l’organisation \u00ab\u00a0Canadian iRARE Centres\/Centres iRARE canadiens\u00a0\u00bb a obtenu sa constitution en tant qu’organisation \u00e0 but non lucratif au niveau f\u00e9d\u00e9ral. Nous esp\u00e9rons \u00e9tablir au moins quatre (4) Centres iRARE \u00e0 travers le Canada. <\/p>\n

L’organisme \u00ab\u00a0Centres iRARE canadiens\/Canadian iRARE Centres\u00a0\u00bb travaille en \u00e9troite collaboration avec le RQMO pour b\u00e9n\u00e9ficier de la longue exp\u00e9rience de son Centre iRARE au Qu\u00e9bec. Les r\u00e9sidents du Qu\u00e9bec peuvent continuer \u00e0 contacter le Centre iRARE du RQMO<\/a> pour obtenir des informations et un soutien pour leur maladie rare. <\/p>\n

Les Centres iRARE canadiens font partie du R\u00e9seau canadien des maladies rares<\/a> (RCMR) et participent au troisi\u00e8me pilier de cette initiative : \u00ab\u00a0Soins, soutien et autonomisation\u00a0\u00bb.<\/p>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t

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L’\u00e9quipe<\/strong><\/h3>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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Conseil d'administration<\/h4>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t
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Gail Ouellette, PhD, est conseill\u00e8re en g\u00e9n\u00e9tique. Elle a cofond\u00e9 le Regroupement qu\u00e9b\u00e9cois des maladies orphelines (RQMO) et en a \u00e9t\u00e9 la pr\u00e9sidente (2010-2023). Elle a cr\u00e9\u00e9 le Centre iRARE du RQMO au Qu\u00e9bec. Elle est membre et a \u00e9t\u00e9 copr\u00e9sidente du Groupe consultatif sur la mise en \u0153uvre de la Strat\u00e9gie nationale sur les m\u00e9dicaments pour les maladies rares (ann\u00e9e 2024).<\/p>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t

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John Adams est un d\u00e9fenseur de la sant\u00e9 des patients et un consultant en gestion. Il est pr\u00e9sident-directeur g\u00e9n\u00e9ral de CanPKU+ et pr\u00e9sident du conseil d’administration de l’association \u00e0 but non lucratif Canadian Best Medicines Coalition. Il a surv\u00e9cu \u00e0 un cancer rare et des membres de sa famille sont ou ont \u00e9t\u00e9 touch\u00e9s par des maladies rares. Il est membre de deux comit\u00e9s consultatifs de Sant\u00e9 Canada : le Groupe consultatif sur la mise en \u0153uvre de la Strat\u00e9gie nationale sur les m\u00e9dicaments pour les maladies rares et le Comit\u00e9 directeur multilat\u00e9ral sur les p\u00e9nuries de m\u00e9dicaments. <\/p>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t

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Joanne Koskie est une sp\u00e9cialiste de l’engagement en mati\u00e8re de plaidoyer social (advocacy), avec une exp\u00e9rience dans la communication et les relations publiques dans le domaine de la sant\u00e9. Elle a soutenu les efforts de nombreux patients, proches aidants et prestataires de soins de sant\u00e9, particuli\u00e8rement pour l’am\u00e9lioration de l’acc\u00e8s aux m\u00e9dicaments pour les maladies rares. Outre les Centres iRARE canadiens, Joanne a \u00e9t\u00e9 b\u00e9n\u00e9vole pour un certain nombre de groupes de patients atteints de maladies rares, et a notamment si\u00e9g\u00e9 au conseil d’administration du Canadian Organization for Rare Disorders.<\/p><\/p>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t

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Notre agente d'information<\/h4>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t
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Mme Amy McNeill r\u00e9pond aux demandes adress\u00e9es \u00e0 notre centre iRARE par les Canadiens hors Qu\u00e9bec. Elle est titulaire d’un Baccalaur\u00e9at \u00ab\u00a0Honors\u00a0\u00bb en biologie mol\u00e9culaire, cellulaire et d\u00e9veloppementale de l’Universit\u00e9 de l’Alberta. Elle a effectu\u00e9 du b\u00e9n\u00e9volat dans des groupes de soutien et a suivi un cours d’introduction au conseil g\u00e9n\u00e9tique.<\/p>\n

Elle est second\u00e9e par Gail Ouellette, conseill\u00e8re en g\u00e9n\u00e9tique, qui a de l’exp\u00e9rience en recherche (g\u00e9n\u00e9tique mol\u00e9culaire, d\u00e9couverte de g\u00e8nes), de l’exp\u00e9rience clinique en conseil g\u00e9n\u00e9tique et de l’exp\u00e9rience de premi\u00e8re main avec le Centre iRARE du Qu\u00e9bec.<\/p>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t

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Un grand merci \u00e0 l’\u00e9quipe du RQMO<\/a> au Qu\u00e9bec qui soutient l’expansion de son centre iRARE au reste du Canada.<\/p>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t

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Mission – Histoire – \u00c9quipe Mission des centres iRARE canadiens La mission des centres iRARE canadiens est d’am\u00e9liorer la vie des Canadiens atteints d’une maladie rare en les informant et en les soutenant, ainsi que leurs proches aidants, leurs familles et leurs professionnels de la sant\u00e9. Les centres iRARE canadiens offrent les services suivants : […]<\/p>\n","protected":false},"author":1,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_uag_custom_page_level_css":"","site-sidebar-layout":"no-sidebar","site-content-layout":"page-builder","ast-site-content-layout":"full-width-container","site-content-style":"default","site-sidebar-style":"default","ast-global-header-display":"","ast-banner-title-visibility":"","ast-main-header-display":"","ast-hfb-above-header-display":"","ast-hfb-below-header-display":"","ast-hfb-mobile-header-display":"","site-post-title":"disabled","ast-breadcrumbs-content":"","ast-featured-img":"disabled","footer-sml-layout":"","theme-transparent-header-meta":"default","adv-header-id-meta":"","stick-header-meta":"","header-above-stick-meta":"","header-main-stick-meta":"","header-below-stick-meta":"","astra-migrate-meta-layouts":"default","ast-page-background-enabled":"default","ast-page-background-meta":{"desktop":{"background-color":"var(--ast-global-color-4)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"tablet":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"mobile":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""}},"ast-content-background-meta":{"desktop":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"tablet":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"mobile":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""}},"footnotes":""},"class_list":["post-4613","page","type-page","status-publish","hentry"],"yoast_head":"\nMission - iRare Centres<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/irarecentres.org\/fr\/mission\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Mission - iRare Centres\" \/>\n<meta property=\"og:description\" content=\"Mission – Histoire – \u00c9quipe Mission des centres iRARE canadiens La mission des centres iRARE canadiens est d’am\u00e9liorer la vie des Canadiens atteints d’une maladie rare en les informant et en les soutenant, ainsi que leurs proches aidants, leurs familles et leurs professionnels de la sant\u00e9. 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