{"id":11858,"date":"2019-06-04T16:07:39","date_gmt":"2019-06-04T16:07:39","guid":{"rendered":"https:\/\/survivornet.ca\/?post_type=news&p=11858\/"},"modified":"2019-06-05T13:19:01","modified_gmt":"2019-06-05T13:19:01","slug":"maladies-rares-en-panorama-un-dialogue-international-rare","status":"publish","type":"news","link":"https:\/\/survivornet.ca\/fr\/apprenez\/nouvelles\/maladies-rares-en-panorama-un-dialogue-international-rare\/","title":{"rendered":"Maladies rares en panorama : “Un dialogue international rare”"},"content":{"rendered":"\n

Des d\u00e9fenseurs des droits des patients, des organismes de sant\u00e9, des professionnels et des repr\u00e9sentants de l’industrie de partout dans le monde ont visit\u00e9 Toronto du 10 au 12 mai 2019 pour participer \u00e0 un “Dialogue international sur les maladies et troubles rares”.  <\/p>\n\n\n\n

\"\"
Photo @raredisorders<\/figcaption><\/figure><\/div>\n\n\n\n

La\nconf\u00e9rence \u00e9tait organis\u00e9e par le Rare Diseases International (RDI) et le Canadian\nOrganization for Rare Disorders (CORD). C’\u00e9tait la toute premi\u00e8re fois qu’un\n\u00e9v\u00e9nement de ce genre avait lieu en Am\u00e9rique du Nord.  <\/p>\n\n\n\n

Le changement\nd\u2019opinion internationale \u00e0 l’\u00e9gard des maladies rares a sans doubt influenc\u00e9 la\nfa\u00e7on dont les intervenants ont abord\u00e9 les discussions sur la ” raret\u00e9\n” et la viabilit\u00e9 du syst\u00e8me de sant\u00e9. Elle a \u00e9galement encourag\u00e9 un front\nuni et mondial pour r\u00e9pondre aux besoins de la population touch\u00e9e par les\nmaladies rares. Comme mise en perspective, Orphanet a identifi\u00e9 que 3,5 \u00e0 5,9 %\nde la population mondiale est atteinte d’une maladie rare, soit 263 \u00e0 446\nmillions de personnes dans le monde. Chaque ann\u00e9e en Europe, 4,3 millions de\npersonnes re\u00e7oivent un diagnostic de cancer rare.<\/p>\n\n\n\n

“Nos\nrelations dans le domaine des soins de sant\u00e9 sont en rapport avec les maladies\nrares”, a d\u00e9clar\u00e9 la s\u00e9natrice Mary Harney, une ex-chef et ministre de la\nSant\u00e9 et des Enfants du gouvernement irlandais d\u00e9mocrate-progressiste.<\/p>\n\n\n\n

Le RCSC est\nfier d’avoir eu l’occasion de participer \u00e0 d’importantes discussions sur les\nmaladies rares. Nous sommes impatients de savoir ce qui attend CORD et RDI l’an\nprochain !<\/p>\n\n\n\n

\u00c0 propos du\nCanadian Organization for Rare Diseases et du Rare Diseases International<\/p>\n\n\n\n

CORD est le\nr\u00e9seau national canadien d\u2019organismes qui repr\u00e9sente toutes les personnes\natteintes de maladies rares. Pour en savoir plus, visitez https:\/\/www.raredisorders.ca\/.<\/a><\/p>\n\n\n\n

RDI voit que les personnes atteintes d\u2019une maladie rare sont confront\u00e9es \u00e0 des d\u00e9fis similaires, quel que soit l’endroit o\u00f9 elles vivent dans le monde. Pour en savoir plus, veuillez visiter https:\/\/www.rarediseasesinternational.org\/.<\/a><\/p>\n\n\n\n

Si vous\ncherchez des sources en fran\u00e7ais veuillez consulter : http:\/\/areq.lacsq.org\/a-propos\/mission-et-historique\/<\/a><\/p>\n\n\n

<\/p>\n

<\/p>","protected":false},"excerpt":{"rendered":"

Des d\u00e9fenseurs des droits des patients, des organismes de sant\u00e9, des professionnels et des repr\u00e9sentants de l’industrie de partout dans le monde ont visit\u00e9 Toronto du 10 au 12 mai 2019 pour<\/p>\n","protected":false},"author":2,"featured_media":11499,"comment_status":"open","ping_status":"closed","template":"","tags":[],"news-category":[],"class_list":["post-11858","news","type-news","status-publish","has-post-thumbnail","hentry"],"acf":[],"yoast_head":"\nMaladies rares en panorama : "Un dialogue international rare" - Canadian Cancer Survivor Network<\/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:\/\/survivornet.ca\/fr\/apprenez\/nouvelles\/maladies-rares-en-panorama-un-dialogue-international-rare\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Maladies rares en panorama : "Un dialogue international rare" - 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