{"id":102891,"date":"2026-08-29T05:58:19","date_gmt":"2026-08-29T10:58:19","guid":{"rendered":"https:\/\/luchonoticias.com\/editor\/?p=102891"},"modified":"2026-08-29T05:58:19","modified_gmt":"2026-08-29T10:58:19","slug":"federacion-de-enfermedades-raras-y-sus-prioridades","status":"publish","type":"post","link":"https:\/\/luchonoticias.com\/editor\/federacion-de-enfermedades-raras-y-sus-prioridades\/","title":{"rendered":"Federaci\u00f3n de enfermedades raras y sus prioridades"},"content":{"rendered":"\n<p class=\"wp-block-paragraph\">Las barreras para acceder a medicamentos, tecnolog\u00edas y servicios de salud contin\u00faan afectando a los pacientes con <strong>enfermedades raras y hu\u00e9rfanas en Colombia<\/strong>, quienes enfrentan dificultades que pueden comprometer la continuidad de sus tratamientos. Las organizaciones de pacientes advierten que la interrupci\u00f3n de la atenci\u00f3n puede provocar da\u00f1os irreversibles y consecuencias que, en algunos casos, podr\u00edan prevenirse. Ante este panorama, la Federaci\u00f3n Colombiana de Enfermedades Raras present\u00f3 al Gobierno una hoja de ruta con cinco prioridades para mejorar la atenci\u00f3n de esta poblaci\u00f3n.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">El documento, entregado a la ministra de Salud, Ana Mar\u00eda Vesga, propone como primer eje fortalecer la <strong>detecci\u00f3n temprana y el diagn\u00f3stico oportuno<\/strong>, con especial \u00e9nfasis en la implementaci\u00f3n de la Ley de Tamizaje Neonatal. Seg\u00fan la Federaci\u00f3n, identificar estas enfermedades desde los primeros momentos de vida permitir\u00eda iniciar los tratamientos de manera m\u00e1s r\u00e1pida y reducir la progresi\u00f3n de algunas condiciones. La segunda prioridad es ampliar el acceso a tratamientos innovadores, incluidos medicamentos, tecnolog\u00edas y servicios complementarios requeridos por los pacientes.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">El tercer punto plantea desarrollar <strong>mecanismos innovadores de financiaci\u00f3n y acceso<\/strong>, teniendo en cuenta las dificultades que presentan los esquemas tradicionales para garantizar la atenci\u00f3n de enfermedades de alta complejidad. A esto se suma la necesidad de fortalecer los procesos regulatorios, debido a que los tiempos de aprobaci\u00f3n de algunos medicamentos pueden ser prolongados y, en el caso de las enfermedades raras, estas demoras pueden tener consecuencias especialmente graves.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">El quinto eje busca reducir las barreras de acceso y avanzar hacia una <strong>atenci\u00f3n integral y oportuna<\/strong>, con una participaci\u00f3n m\u00e1s activa de las organizaciones de pacientes en las decisiones y en el seguimiento de las medidas adoptadas por el Gobierno. Diego Gil, presidente de la Federaci\u00f3n Colombiana de Enfermedades Raras, se\u00f1al\u00f3 que ya se han adelantado conversaciones con el Ministerio de Salud, la Cuenta de Alto Costo y otras entidades para construir un plan de choque que no solo incluya a quienes tienen enfermedades raras, sino tambi\u00e9n a pacientes con enfermedades cr\u00f3nicas complejas y de alto costo.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Las discusiones se desarrollan en el marco del <strong>Congreso RARAMED Colombia<\/strong>, encuentro anual dedicado a las enfermedades raras y los medicamentos hu\u00e9rfanos, que re\u00fane durante dos d\u00edas a autoridades sanitarias, prestadores, aseguradoras, organizaciones de pacientes e instituciones relacionadas con la atenci\u00f3n de esta poblaci\u00f3n. El prop\u00f3sito es analizar las dificultades que persisten en el sistema, visibilizar las necesidades de los pacientes y formular propuestas que permitan avanzar hacia una atenci\u00f3n m\u00e1s oportuna, integral y con mayor participaci\u00f3n de quienes viven con estas enfermedades.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Las barreras para acceder a medicamentos, tecnolog\u00edas y servicios de salud contin\u00faan afectando a los pacientes con enfermedades raras y hu\u00e9rfanas en Colombia, quienes enfrentan dificultades que pueden comprometer la continuidad de sus tratamientos. Las organizaciones de pacientes advierten que la interrupci\u00f3n de la atenci\u00f3n puede provocar da\u00f1os irreversibles y consecuencias que, en algunos casos, [&hellip;]<\/p>\n","protected":false},"author":2,"featured_media":102892,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[28,32],"tags":[],"class_list":["post-102891","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-actualidad","category-nacional"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.5 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Federaci\u00f3n de enfermedades raras y sus prioridades -<\/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:\/\/luchonoticias.com\/editor\/federacion-de-enfermedades-raras-y-sus-prioridades\/\" 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