{"id":17719,"date":"2025-02-25T18:06:00","date_gmt":"2025-02-25T17:06:00","guid":{"rendered":"https:\/\/www.cutislaxa.org\/?p=17719"},"modified":"2025-09-03T18:07:36","modified_gmt":"2025-09-03T16:07:36","slug":"4o-plan-nacional-de-enfermedades-raras-en-francia","status":"publish","type":"post","link":"https:\/\/www.cutislaxa.org\/es\/4o-plan-nacional-de-enfermedades-raras-en-francia\/","title":{"rendered":"4\u00ba Plan Nacional de Enfermedades Raras en Francia"},"content":{"rendered":"<p>El 25 de febrero\u00a0 se lanz\u00f3 finalmente en Francia el <strong>4\u00ba Plan Nacional de Enfermedades Raras<\/strong>. Largamente esperado, pero retrasado por el contexto pol\u00edtico, su objetivo es ampliar y continuar el trabajo realizado por los Planes anteriores. Se basa en 4 ejes:<\/p>\n<ul>\n<li>Mejorar el itinerario de vida y cuidado (fortalecimiento de los v\u00ednculos ciudad-hospital, fortalecimiento de la Educaci\u00f3n Terap\u00e9utica del Paciente, desarrollo de acciones espec\u00edficas para per\u00edodos de transici\u00f3n, sensibilizaci\u00f3n, capacitaci\u00f3n e informaci\u00f3n, movilizaci\u00f3n de centros de investigaci\u00f3n en investigaci\u00f3n);<\/li>\n<li>Facilitar y acelerar el diagn\u00f3stico (apoyar el Observatorio de Diagn\u00f3stico, Integrar la fetopatolog\u00eda en la trayectoria del paciente, fortalecer la previsi\u00f3n en el campo de la gen\u00e9tica, promover el cribado prenatal y neonatal, dar un diagn\u00f3stico a cada paciente, promover nuevas tecnolog\u00edas y datos de salud;<\/li>\n<li>Promover el acceso a los tratamientos (reforzar el acceso a tratamientos innovadores, reforzar el desarrollo de nuevas terapias, organizar la recopilaci\u00f3n de datos de la vida real para un acceso temprano y compasivo, apoyar el acceso a la innovaci\u00f3n terap\u00e9utica coordinada con Europa);<\/li>\n<li>Desarrollar bases de datos y biobancos (mejorar la recopilaci\u00f3n y reutilizaci\u00f3n de datos sanitarios, reforzar los biobancos y su uso con fines de investigaci\u00f3n, utilizar las bases de datos sanitarias con fines de investigaci\u00f3n, reforzar el intercambio de datos sanitarios en relaci\u00f3n con Europa).<\/li>\n<\/ul>\n","protected":false},"excerpt":{"rendered":"<p>El 25 de febrero\u00a0 se lanz\u00f3 finalmente en Francia el 4\u00ba Plan Nacional de Enfermedades Raras. Largamente esperado, pero retrasado por el contexto pol\u00edtico, su objetivo es ampliar y continuar el trabajo realizado por los Planes anteriores. Se basa en 4 ejes: Mejorar el itinerario de vida y cuidado (fortalecimiento de los v\u00ednculos ciudad-hospital, fortalecimiento [&hellip;]<\/p>\n","protected":false},"author":2,"featured_media":8532,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[80,76],"tags":[],"class_list":["post-17719","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-legislacion-sociedad","category-noticias"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v22.0 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>4\u00ba Plan Nacional de Enfermedades Raras en Francia - 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\/es\/4o-plan-nacional-de-enfermedades-raras-en-francia\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"4\u00ba Plan Nacional de Enfermedades Raras en Francia - CUTIS LAXA INTERNATIONALE\" \/>\n<meta property=\"og:description\" content=\"El 25 de febrero\u00a0 se lanz\u00f3 finalmente en Francia el 4\u00ba Plan Nacional de Enfermedades Raras. Largamente esperado, pero retrasado por el contexto pol\u00edtico, su objetivo es ampliar y continuar el trabajo realizado por los Planes anteriores. 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