{"id":17716,"date":"2025-02-25T18:04:30","date_gmt":"2025-02-25T17:04:30","guid":{"rendered":"https:\/\/www.cutislaxa.org\/?p=17716"},"modified":"2025-09-03T18:05:49","modified_gmt":"2025-09-03T16:05:49","slug":"4eme-plan-national-maladies-rares-en-france","status":"publish","type":"post","link":"https:\/\/www.cutislaxa.org\/fr\/4eme-plan-national-maladies-rares-en-france\/","title":{"rendered":"4\u00e8me Plan National Maladies rares en France"},"content":{"rendered":"<p>Le 25 F\u00e9vrier, le <strong>4<sup>\u00e8me<\/sup> Plan National Maladies Rares<\/strong> a enfin \u00e9t\u00e9 lanc\u00e9 en France. Attendu depuis longtemps, mais retard\u00e9 par le contexte politique, il vise \u00e0 \u00e9largir et \u00e0 poursuivre le travail accompli par les pr\u00e9c\u00e9dents Plans. Il s\u2019articule autour de 4 axes\u00a0:<\/p>\n<ul>\n<li>Am\u00e9liorer le parcours de vie et de soin (renforcer les liens ville-h\u00f4pital, renforcer l\u2019Education Th\u00e9rapeutique du Patient, d\u00e9velopper des actions sp\u00e9cifiques aux p\u00e9riodes de transition\u00a0, sensibiliser, former et informer, mobiliser les centres investigateurs dans la recherche)\u00a0;<\/li>\n<li>Faciliter et acc\u00e9l\u00e9rer le diagnostic (accompagner l\u2019Observatoire du diagnostic, Int\u00e9grer la foetopathologie dans le parcours du patient, renforcer la prospective dans le champ de la g\u00e9n\u00e9tique, favoriser le d\u00e9pistage ant\u00e9natal et n\u00e9onatal, donner un diagnostic \u00e0 chaque malade, valoriser les nouvelles technologies et les donn\u00e9es de sant\u00e9\u00a0;<\/li>\n<li>Promouvoir l\u2019acc\u00e8s aux traitements (renforcer l\u2019acc\u00e8s aux traitements innovants, renforcer le d\u00e9veloppement de nouvelles th\u00e9rapies, organiser la collecte des donn\u00e9es en vie r\u00e9elle pour les acc\u00e8s pr\u00e9coces et compassionnels, soutenir l\u2019acc\u00e8s \u00e0 l\u2019innovation th\u00e9rapeutique coordonn\u00e9e avec l\u2019Europe)\u00a0;<\/li>\n<li>D\u00e9velopper les bases de donn\u00e9es et les biobanques (am\u00e9liorer la collecte et la r\u00e9utilisation des donn\u00e9es de sant\u00e9, renforcer les biobanques et leur usage \u00e0 des fins de recherche, utiliser les bases de donn\u00e9es de sant\u00e9 \u00e0 des fins de recherche, renforcer le partage des donn\u00e9es de sant\u00e9 en lien avec l\u2019Europe).<\/li>\n<\/ul>\n","protected":false},"excerpt":{"rendered":"<p>Le 25 F\u00e9vrier, le 4\u00e8me Plan National Maladies Rares a enfin \u00e9t\u00e9 lanc\u00e9 en France. Attendu depuis longtemps, mais retard\u00e9 par le contexte politique, il vise \u00e0 \u00e9largir et \u00e0 poursuivre le travail accompli par les pr\u00e9c\u00e9dents Plans. Il s\u2019articule autour de 4 axes\u00a0: Am\u00e9liorer le parcours de vie et de soin (renforcer les liens [&hellip;]<\/p>\n","protected":false},"author":2,"featured_media":8531,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[63,61],"tags":[],"class_list":["post-17716","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>4\u00e8me Plan National Maladies rares en France - 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\/4eme-plan-national-maladies-rares-en-france\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"4\u00e8me Plan National Maladies rares en France - CUTIS LAXA INTERNATIONALE\" \/>\n<meta property=\"og:description\" content=\"Le 25 F\u00e9vrier, le 4\u00e8me Plan National Maladies Rares a enfin \u00e9t\u00e9 lanc\u00e9 en France. Attendu depuis longtemps, mais retard\u00e9 par le contexte politique, il vise \u00e0 \u00e9largir et \u00e0 poursuivre le travail accompli par les pr\u00e9c\u00e9dents Plans. Il s\u2019articule autour de 4 axes\u00a0: Am\u00e9liorer le parcours de vie et de soin (renforcer les liens [&hellip;]\" \/>\n<meta property=\"og:url\" content=\"https:\/\/www.cutislaxa.org\/fr\/4eme-plan-national-maladies-rares-en-france\/\" \/>\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=\"2025-02-25T17:04:30+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2025-09-03T16:05:49+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2020\/02\/France.jpg\" \/>\n\t<meta property=\"og:image:width\" content=\"225\" \/>\n\t<meta property=\"og:image:height\" content=\"225\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/jpeg\" \/>\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=\"1 minute\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\/\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\/\/www.cutislaxa.org\/fr\/4eme-plan-national-maladies-rares-en-france\/#article\",\"isPartOf\":{\"@id\":\"https:\/\/www.cutislaxa.org\/fr\/4eme-plan-national-maladies-rares-en-france\/\"},\"author\":{\"name\":\"Marie-Claude\",\"@id\":\"https:\/\/www.cutislaxa.org\/#\/schema\/person\/2b5e58dca5a6f412607f985f2823d045\"},\"headline\":\"4\u00e8me Plan National Maladies rares en France\",\"datePublished\":\"2025-02-25T17:04:30+00:00\",\"dateModified\":\"2025-09-03T16:05:49+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\/\/www.cutislaxa.org\/fr\/4eme-plan-national-maladies-rares-en-france\/\"},\"wordCount\":260,\"publisher\":{\"@id\":\"https:\/\/www.cutislaxa.org\/#organization\"},\"articleSection\":[\"L\u00e9gislation - 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