{"id":17065,"date":"2024-09-06T17:21:47","date_gmt":"2024-09-06T15:21:47","guid":{"rendered":"https:\/\/www.cutislaxa.org\/?p=17065"},"modified":"2025-02-06T17:24:24","modified_gmt":"2025-02-06T16:24:24","slug":"resolution-de-lassemblee-mondiale-de-la-sante-ams-sur-les-maladies-rares","status":"publish","type":"post","link":"https:\/\/www.cutislaxa.org\/fr\/resolution-de-lassemblee-mondiale-de-la-sante-ams-sur-les-maladies-rares\/","title":{"rendered":"R\u00e9solution de l\u2019Assembl\u00e9e mondiale de la sant\u00e9 (AMS) sur les maladies rares"},"content":{"rendered":"<p>Le 30 ao\u00fbt 2024, Rare Diseases International (RDI), la R\u00e9publique arabe d\u2019\u00c9gypte, L\u2019\u00c9tat du Qatar et l\u2019Espagne ont organis\u00e9 conjointement un webinaire public sur la campagne en faveur d\u2019une r\u00e9solution de l\u2019Assembl\u00e9e mondiale de la sant\u00e9 (AMS) sur les maladies rares en 2025. L\u2019\u00e9v\u00e9nement a donn\u00e9 lieu \u00e0 des discussions sur les raisons pour lesquelles une telle r\u00e9solution est essentielle, sur ce qu\u2019elle peut apporter aux personnes vivant avec une maladie rare aux niveaux r\u00e9gional et national, et sur ce qui doit \u00eatre fait pour que la campagne soit fructueuse.<\/p>\n<p>Malgr\u00e9 les r\u00e9centes avanc\u00e9es mondiales dans la prise de conscience des besoins non satisfaits des personnes atteintes d&rsquo;une maladie rare, notamment la r\u00e9solution de l\u2019ONU de 2021 sur les patients et leurs familles, la communaut\u00e9 continue \u00e0 faire face \u00e0 un certain nombre de d\u00e9fis importants, en particulier un acc\u00e8s limit\u00e9 aux traitements et aux soins, des retards de diagnostic et une charge financi\u00e8re \u00e9lev\u00e9e. Ces difficult\u00e9s sont souvent exacerb\u00e9es dans les pays \u00e0 revenu faible ou interm\u00e9diaire (PRFI).<\/p>\n<p>Une r\u00e9solution de l\u2019AMS sur les maladies rares contribuerait \u00e0 relever ces d\u00e9fis en s\u2019appuyant sur l\u2019\u00e9lan g\u00e9n\u00e9r\u00e9 par la r\u00e9solution de l\u2019ONU et en instituant un cadre mondial complet, ax\u00e9 sur la sant\u00e9, pour les maladies rares, avec des objectifs et des d\u00e9lais clairs pour tous les \u00c9tats membres de l\u2019OMS. La campagne en faveur d\u2019une telle r\u00e9solution a d\u2019abord \u00e9t\u00e9 men\u00e9e par RDI, puis l\u2019\u00c9gypte, le Qatar, l\u2019Espagne, la Malaisie et la France ont accept\u00e9 de la coparrainer. (\u00a9orphanews 2024.09.18)<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Le 30 ao\u00fbt 2024, Rare Diseases International (RDI), la R\u00e9publique arabe d\u2019\u00c9gypte, L\u2019\u00c9tat du Qatar et l\u2019Espagne ont organis\u00e9 conjointement un webinaire public sur la campagne en faveur d\u2019une r\u00e9solution de l\u2019Assembl\u00e9e mondiale de la sant\u00e9 (AMS) sur les maladies rares en 2025. L\u2019\u00e9v\u00e9nement a donn\u00e9 lieu \u00e0 des discussions sur les raisons pour lesquelles [&hellip;]<\/p>\n","protected":false},"author":2,"featured_media":7204,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[63,61],"tags":[],"class_list":["post-17065","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-legislation-society-fr","category-quoi-de-neuf"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v22.0 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>R\u00e9solution de l\u2019Assembl\u00e9e mondiale de la sant\u00e9 (AMS) sur les maladies rares - CUTIS LAXA INTERNATIONALE<\/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:\/\/www.cutislaxa.org\/fr\/resolution-de-lassemblee-mondiale-de-la-sante-ams-sur-les-maladies-rares\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"R\u00e9solution de l\u2019Assembl\u00e9e mondiale de la sant\u00e9 (AMS) sur les maladies rares - CUTIS LAXA INTERNATIONALE\" \/>\n<meta property=\"og:description\" content=\"Le 30 ao\u00fbt 2024, Rare Diseases International (RDI), la R\u00e9publique arabe d\u2019\u00c9gypte, L\u2019\u00c9tat du Qatar et l\u2019Espagne ont organis\u00e9 conjointement un webinaire public sur la campagne en faveur d\u2019une r\u00e9solution de l\u2019Assembl\u00e9e mondiale de la sant\u00e9 (AMS) sur les maladies rares en 2025. 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