{"id":18576,"date":"2025-10-16T17:44:51","date_gmt":"2025-10-16T15:44:51","guid":{"rendered":"https:\/\/www.cutislaxa.org\/?p=18576"},"modified":"2026-03-16T17:49:02","modified_gmt":"2026-03-16T16:49:02","slug":"3-nouveaux-plans-nationaux-maladies-rares-dans-le-monde","status":"publish","type":"post","link":"https:\/\/www.cutislaxa.org\/fr\/3-nouveaux-plans-nationaux-maladies-rares-dans-le-monde\/","title":{"rendered":"3 nouveaux plans nationaux maladies rares dans le monde"},"content":{"rendered":"<p><em>Ils s\u2019inscrivent tous les trois dans le contexte de\u00a0l&rsquo;adoption de la R\u00e9solution de l&rsquo;Assembl\u00e9e Mondiale de la Sant\u00e9 sur les maladies rares. (\u00a9 Orphanews 2025.10.06)<\/em><\/p>\n<p style=\"text-align: center;\"><strong>Malaisie <\/strong><\/p>\n<p>C\u2019est la toute premi\u00e8re strat\u00e9gie nationale pour les maladies rares. Elle vise \u00e0 combler les lacunes critiques et \u00e0 renforcer les soins de sant\u00e9 int\u00e9gr\u00e9s pour les personnes atteintes d\u2019une maladie rare en Malaisie. La politique d\u00e9finit une maladie comme rare si elle touche moins d\u2019une personne sur 4 000, et identifie 9 piliers d\u2019action cl\u00e9s pour am\u00e9liorer les soins, le diagnostic et la sensibilisation aux maladies rares.<\/p>\n<p style=\"text-align: center;\"><strong>Irlande<\/strong><\/p>\n<p>Le Minist\u00e8re irlandais de la sant\u00e9 a d\u00e9voil\u00e9 sa strat\u00e9gie nationale sur les maladies rares pour la p\u00e9riode 2025-2030. Cette strat\u00e9gie s&rsquo;appuie sur les fondements du pr\u00e9c\u00e9dent Plan national irlandais pour les maladies rares (2014-2018), et aborde les probl\u00e8mes rencontr\u00e9s par les personnes atteintes de maladies rares \u00e0 tous les stades de la vie. Fruit d\u2019une collaboration multipartite entre patients, cliniciens, chercheurs et repr\u00e9sentants du gouvernement, la strat\u00e9gie propose 11 recommandations pour renforcer la prise en charge et la sensibilisation aux maladies rares en Irlande.<\/p>\n<p style=\"text-align: center;\"><strong>Luxembourg <\/strong><\/p>\n<p>Le Minist\u00e8re luxembourgeois de la sant\u00e9 a adopt\u00e9 le Plan National Maladies Rares Luxembourg 2025-2029 (PNMRL). Ce plan s\u2019inscrit dans la continuit\u00e9 du premier plan national, mis en place pour la p\u00e9riode 2018-2023, et vise \u00e0 promouvoir un syst\u00e8me de soins de sant\u00e9 renforc\u00e9 et coordonn\u00e9 pour les personnes vivant avec une maladie rare au Luxembourg. Il adopte une approche holistique, centr\u00e9e sur la personne, des d\u00e9fis auxquels est confront\u00e9e la communaut\u00e9 des maladies rares \u00e0 travers cinq domaines th\u00e9matiques.<\/p>\n<p>&nbsp;<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Ils s\u2019inscrivent tous les trois dans le contexte de\u00a0l&rsquo;adoption de la R\u00e9solution de l&rsquo;Assembl\u00e9e Mondiale de la Sant\u00e9 sur les maladies rares. (\u00a9 Orphanews 2025.10.06) Malaisie C\u2019est la toute premi\u00e8re strat\u00e9gie nationale pour les maladies rares. Elle vise \u00e0 combler les lacunes critiques et \u00e0 renforcer les soins de sant\u00e9 int\u00e9gr\u00e9s pour les personnes atteintes [&hellip;]<\/p>\n","protected":false},"author":2,"featured_media":18577,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[63,61],"tags":[],"class_list":["post-18576","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>3 nouveaux plans nationaux maladies rares dans le monde - 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\/3-nouveaux-plans-nationaux-maladies-rares-dans-le-monde\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"3 nouveaux plans nationaux maladies rares dans le monde - CUTIS LAXA INTERNATIONALE\" \/>\n<meta property=\"og:description\" content=\"Ils s\u2019inscrivent tous les trois dans le contexte de\u00a0l&rsquo;adoption de la R\u00e9solution de l&rsquo;Assembl\u00e9e Mondiale de la Sant\u00e9 sur les maladies rares. (\u00a9 Orphanews 2025.10.06) Malaisie C\u2019est la toute premi\u00e8re strat\u00e9gie nationale pour les maladies rares. Elle vise \u00e0 combler les lacunes critiques et \u00e0 renforcer les soins de sant\u00e9 int\u00e9gr\u00e9s pour les personnes atteintes [&hellip;]\" \/>\n<meta property=\"og:url\" content=\"https:\/\/www.cutislaxa.org\/fr\/3-nouveaux-plans-nationaux-maladies-rares-dans-le-monde\/\" \/>\n<meta property=\"og:site_name\" content=\"CUTIS LAXA INTERNATIONALE\" \/>\n<meta property=\"article:publisher\" content=\"https:\/\/www.facebook.com\/CutisLaxaAssociation\/\" \/>\n<meta property=\"article:published_time\" content=\"2025-10-16T15:44:51+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2026-03-16T16:49:02+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2019\/01\/drapeau-nations-unies.png\" \/>\n\t<meta property=\"og:image:width\" content=\"175\" \/>\n\t<meta property=\"og:image:height\" content=\"121\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/png\" \/>\n<meta name=\"author\" content=\"Marie-Claude\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"\u00c9crit par\" \/>\n\t<meta name=\"twitter:data1\" content=\"Marie-Claude\" \/>\n\t<meta name=\"twitter:label2\" content=\"Dur\u00e9e de lecture estim\u00e9e\" \/>\n\t<meta name=\"twitter:data2\" content=\"2 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\/\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\/\/www.cutislaxa.org\/fr\/3-nouveaux-plans-nationaux-maladies-rares-dans-le-monde\/#article\",\"isPartOf\":{\"@id\":\"https:\/\/www.cutislaxa.org\/fr\/3-nouveaux-plans-nationaux-maladies-rares-dans-le-monde\/\"},\"author\":{\"name\":\"Marie-Claude\",\"@id\":\"https:\/\/www.cutislaxa.org\/#\/schema\/person\/2b5e58dca5a6f412607f985f2823d045\"},\"headline\":\"3 nouveaux plans nationaux maladies rares dans le monde\",\"datePublished\":\"2025-10-16T15:44:51+00:00\",\"dateModified\":\"2026-03-16T16:49:02+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\/\/www.cutislaxa.org\/fr\/3-nouveaux-plans-nationaux-maladies-rares-dans-le-monde\/\"},\"wordCount\":294,\"publisher\":{\"@id\":\"https:\/\/www.cutislaxa.org\/#organization\"},\"articleSection\":[\"L\u00e9gislation - soci\u00e9t\u00e9\",\"Quoi de neuf\"],\"inLanguage\":\"fr-FR\"},{\"@type\":\"WebPage\",\"@id\":\"https:\/\/www.cutislaxa.org\/fr\/3-nouveaux-plans-nationaux-maladies-rares-dans-le-monde\/\",\"url\":\"https:\/\/www.cutislaxa.org\/fr\/3-nouveaux-plans-nationaux-maladies-rares-dans-le-monde\/\",\"name\":\"3 nouveaux plans nationaux maladies rares dans le monde - CUTIS LAXA INTERNATIONALE\",\"isPartOf\":{\"@id\":\"https:\/\/www.cutislaxa.org\/#website\"},\"datePublished\":\"2025-10-16T15:44:51+00:00\",\"dateModified\":\"2026-03-16T16:49:02+00:00\",\"breadcrumb\":{\"@id\":\"https:\/\/www.cutislaxa.org\/fr\/3-nouveaux-plans-nationaux-maladies-rares-dans-le-monde\/#breadcrumb\"},\"inLanguage\":\"fr-FR\",\"potentialAction\":[{\"@type\":\"ReadAction\",\"target\":[\"https:\/\/www.cutislaxa.org\/fr\/3-nouveaux-plans-nationaux-maladies-rares-dans-le-monde\/\"]}]},{\"@type\":\"BreadcrumbList\",\"@id\":\"https:\/\/www.cutislaxa.org\/fr\/3-nouveaux-plans-nationaux-maladies-rares-dans-le-monde\/#breadcrumb\",\"itemListElement\":[{\"@type\":\"ListItem\",\"position\":1,\"name\":\"Home\",\"item\":\"https:\/\/www.cutislaxa.org\/fr\/accueil\/\"},{\"@type\":\"ListItem\",\"position\":2,\"name\":\"3 nouveaux plans nationaux maladies rares dans le monde\"}]},{\"@type\":\"WebSite\",\"@id\":\"https:\/\/www.cutislaxa.org\/#website\",\"url\":\"https:\/\/www.cutislaxa.org\/\",\"name\":\"CUTIS LAXA INTERNATIONALE\",\"description\":\"\",\"publisher\":{\"@id\":\"https:\/\/www.cutislaxa.org\/#organization\"},\"potentialAction\":[{\"@type\":\"SearchAction\",\"target\":{\"@type\":\"EntryPoint\",\"urlTemplate\":\"https:\/\/www.cutislaxa.org\/?s={search_term_string}\"},\"query-input\":\"required name=search_term_string\"}],\"inLanguage\":\"fr-FR\"},{\"@type\":\"Organization\",\"@id\":\"https:\/\/www.cutislaxa.org\/#organization\",\"name\":\"Cutis Laxa Internationale\",\"url\":\"https:\/\/www.cutislaxa.org\/\",\"logo\":{\"@type\":\"ImageObject\",\"inLanguage\":\"fr-FR\",\"@id\":\"https:\/\/www.cutislaxa.org\/#\/schema\/logo\/image\/\",\"url\":\"https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2017\/12\/NEW-LOGO-CLI-4.png\",\"contentUrl\":\"https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2017\/12\/NEW-LOGO-CLI-4.png\",\"width\":417,\"height\":120,\"caption\":\"Cutis Laxa Internationale\"},\"image\":{\"@id\":\"https:\/\/www.cutislaxa.org\/#\/schema\/logo\/image\/\"},\"sameAs\":[\"https:\/\/www.facebook.com\/CutisLaxaAssociation\/\"]},{\"@type\":\"Person\",\"@id\":\"https:\/\/www.cutislaxa.org\/#\/schema\/person\/2b5e58dca5a6f412607f985f2823d045\",\"name\":\"Marie-Claude\",\"image\":{\"@type\":\"ImageObject\",\"inLanguage\":\"fr-FR\",\"@id\":\"https:\/\/www.cutislaxa.org\/#\/schema\/person\/image\/\",\"url\":\"https:\/\/secure.gravatar.com\/avatar\/f56014046df7c736afcf45ec2d3ba3e6?s=96&d=mm&r=g\",\"contentUrl\":\"https:\/\/secure.gravatar.com\/avatar\/f56014046df7c736afcf45ec2d3ba3e6?s=96&d=mm&r=g\",\"caption\":\"Marie-Claude\"}}]}<\/script>\n<!-- \/ Yoast SEO plugin. -->","yoast_head_json":{"title":"3 nouveaux plans nationaux maladies rares dans le monde - CUTIS LAXA INTERNATIONALE","robots":{"index":"index","follow":"follow","max-snippet":"max-snippet:-1","max-image-preview":"max-image-preview:large","max-video-preview":"max-video-preview:-1"},"canonical":"https:\/\/www.cutislaxa.org\/fr\/3-nouveaux-plans-nationaux-maladies-rares-dans-le-monde\/","og_locale":"fr_FR","og_type":"article","og_title":"3 nouveaux plans nationaux maladies rares dans le monde - CUTIS LAXA INTERNATIONALE","og_description":"Ils s\u2019inscrivent tous les trois dans le contexte de\u00a0l&rsquo;adoption de la R\u00e9solution de l&rsquo;Assembl\u00e9e Mondiale de la Sant\u00e9 sur les maladies rares. (\u00a9 Orphanews 2025.10.06) Malaisie C\u2019est la toute premi\u00e8re strat\u00e9gie nationale pour les maladies rares. Elle vise \u00e0 combler les lacunes critiques et \u00e0 renforcer les soins de sant\u00e9 int\u00e9gr\u00e9s pour les personnes atteintes [&hellip;]","og_url":"https:\/\/www.cutislaxa.org\/fr\/3-nouveaux-plans-nationaux-maladies-rares-dans-le-monde\/","og_site_name":"CUTIS LAXA INTERNATIONALE","article_publisher":"https:\/\/www.facebook.com\/CutisLaxaAssociation\/","article_published_time":"2025-10-16T15:44:51+00:00","article_modified_time":"2026-03-16T16:49:02+00:00","og_image":[{"width":175,"height":121,"url":"https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2019\/01\/drapeau-nations-unies.png","type":"image\/png"}],"author":"Marie-Claude","twitter_card":"summary_large_image","twitter_misc":{"\u00c9crit par":"Marie-Claude","Dur\u00e9e de lecture estim\u00e9e":"2 minutes"},"schema":{"@context":"https:\/\/schema.org","@graph":[{"@type":"Article","@id":"https:\/\/www.cutislaxa.org\/fr\/3-nouveaux-plans-nationaux-maladies-rares-dans-le-monde\/#article","isPartOf":{"@id":"https:\/\/www.cutislaxa.org\/fr\/3-nouveaux-plans-nationaux-maladies-rares-dans-le-monde\/"},"author":{"name":"Marie-Claude","@id":"https:\/\/www.cutislaxa.org\/#\/schema\/person\/2b5e58dca5a6f412607f985f2823d045"},"headline":"3 nouveaux plans nationaux maladies rares dans le monde","datePublished":"2025-10-16T15:44:51+00:00","dateModified":"2026-03-16T16:49:02+00:00","mainEntityOfPage":{"@id":"https:\/\/www.cutislaxa.org\/fr\/3-nouveaux-plans-nationaux-maladies-rares-dans-le-monde\/"},"wordCount":294,"publisher":{"@id":"https:\/\/www.cutislaxa.org\/#organization"},"articleSection":["L\u00e9gislation - soci\u00e9t\u00e9","Quoi de neuf"],"inLanguage":"fr-FR"},{"@type":"WebPage","@id":"https:\/\/www.cutislaxa.org\/fr\/3-nouveaux-plans-nationaux-maladies-rares-dans-le-monde\/","url":"https:\/\/www.cutislaxa.org\/fr\/3-nouveaux-plans-nationaux-maladies-rares-dans-le-monde\/","name":"3 nouveaux plans nationaux maladies rares dans le monde - CUTIS LAXA INTERNATIONALE","isPartOf":{"@id":"https:\/\/www.cutislaxa.org\/#website"},"datePublished":"2025-10-16T15:44:51+00:00","dateModified":"2026-03-16T16:49:02+00:00","breadcrumb":{"@id":"https:\/\/www.cutislaxa.org\/fr\/3-nouveaux-plans-nationaux-maladies-rares-dans-le-monde\/#breadcrumb"},"inLanguage":"fr-FR","potentialAction":[{"@type":"ReadAction","target":["https:\/\/www.cutislaxa.org\/fr\/3-nouveaux-plans-nationaux-maladies-rares-dans-le-monde\/"]}]},{"@type":"BreadcrumbList","@id":"https:\/\/www.cutislaxa.org\/fr\/3-nouveaux-plans-nationaux-maladies-rares-dans-le-monde\/#breadcrumb","itemListElement":[{"@type":"ListItem","position":1,"name":"Home","item":"https:\/\/www.cutislaxa.org\/fr\/accueil\/"},{"@type":"ListItem","position":2,"name":"3 nouveaux plans nationaux maladies rares dans le monde"}]},{"@type":"WebSite","@id":"https:\/\/www.cutislaxa.org\/#website","url":"https:\/\/www.cutislaxa.org\/","name":"CUTIS LAXA INTERNATIONALE","description":"","publisher":{"@id":"https:\/\/www.cutislaxa.org\/#organization"},"potentialAction":[{"@type":"SearchAction","target":{"@type":"EntryPoint","urlTemplate":"https:\/\/www.cutislaxa.org\/?s={search_term_string}"},"query-input":"required name=search_term_string"}],"inLanguage":"fr-FR"},{"@type":"Organization","@id":"https:\/\/www.cutislaxa.org\/#organization","name":"Cutis Laxa Internationale","url":"https:\/\/www.cutislaxa.org\/","logo":{"@type":"ImageObject","inLanguage":"fr-FR","@id":"https:\/\/www.cutislaxa.org\/#\/schema\/logo\/image\/","url":"https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2017\/12\/NEW-LOGO-CLI-4.png","contentUrl":"https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2017\/12\/NEW-LOGO-CLI-4.png","width":417,"height":120,"caption":"Cutis Laxa Internationale"},"image":{"@id":"https:\/\/www.cutislaxa.org\/#\/schema\/logo\/image\/"},"sameAs":["https:\/\/www.facebook.com\/CutisLaxaAssociation\/"]},{"@type":"Person","@id":"https:\/\/www.cutislaxa.org\/#\/schema\/person\/2b5e58dca5a6f412607f985f2823d045","name":"Marie-Claude","image":{"@type":"ImageObject","inLanguage":"fr-FR","@id":"https:\/\/www.cutislaxa.org\/#\/schema\/person\/image\/","url":"https:\/\/secure.gravatar.com\/avatar\/f56014046df7c736afcf45ec2d3ba3e6?s=96&d=mm&r=g","contentUrl":"https:\/\/secure.gravatar.com\/avatar\/f56014046df7c736afcf45ec2d3ba3e6?s=96&d=mm&r=g","caption":"Marie-Claude"}}]}},"_links":{"self":[{"href":"https:\/\/www.cutislaxa.org\/fr\/wp-json\/wp\/v2\/posts\/18576","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.cutislaxa.org\/fr\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.cutislaxa.org\/fr\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.cutislaxa.org\/fr\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.cutislaxa.org\/fr\/wp-json\/wp\/v2\/comments?post=18576"}],"version-history":[{"count":2,"href":"https:\/\/www.cutislaxa.org\/fr\/wp-json\/wp\/v2\/posts\/18576\/revisions"}],"predecessor-version":[{"id":18579,"href":"https:\/\/www.cutislaxa.org\/fr\/wp-json\/wp\/v2\/posts\/18576\/revisions\/18579"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.cutislaxa.org\/fr\/wp-json\/wp\/v2\/media\/18577"}],"wp:attachment":[{"href":"https:\/\/www.cutislaxa.org\/fr\/wp-json\/wp\/v2\/media?parent=18576"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.cutislaxa.org\/fr\/wp-json\/wp\/v2\/categories?post=18576"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.cutislaxa.org\/fr\/wp-json\/wp\/v2\/tags?post=18576"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}