{"id":97703,"date":"2026-05-05T04:40:52","date_gmt":"2026-05-05T09:40:52","guid":{"rendered":"https:\/\/luchonoticias.com\/editor\/?p=97703"},"modified":"2026-05-05T04:40:53","modified_gmt":"2026-05-05T09:40:53","slug":"cuantas-personas-con-enfermedades-raras-en-colombia","status":"publish","type":"post","link":"https:\/\/luchonoticias.com\/editor\/cuantas-personas-con-enfermedades-raras-en-colombia\/","title":{"rendered":"\u00bfCu\u00e1ntas personas con enfermedades raras en Colombia?"},"content":{"rendered":"\n<p>La Federaci\u00f3n Colombiana de Enfermedades Raras (Fecoer) encendi\u00f3 las alarmas al calificar como una \u201curgencia nacional\u201d la mortalidad de pacientes con estas patolog\u00edas en el pa\u00eds. Entre el 1 de enero y el 13 de diciembre de 2025, se registraron 2.436 fallecimientos.<\/p>\n\n\n\n<p>Seg\u00fan la organizaci\u00f3n, muchas de estas muertes estar\u00edan relacionadas con barreras de acceso al sistema de salud y la interrupci\u00f3n de tratamientos, lo que afecta a una poblaci\u00f3n especialmente vulnerable que, en teor\u00eda, cuenta con protecci\u00f3n bajo la Ley Estatutaria de Salud.<\/p>\n\n\n\n<p>El director de Fecoer, Diego Gil, advirti\u00f3 que la tasa de mortalidad muestra un aumento preocupante. Aunque la cifra total ya fue consolidada, se\u00f1al\u00f3 que a\u00fan no existe una desagregaci\u00f3n oficial por parte del Ministerio de Salud que permita establecer cu\u00e1ntos de estos decesos est\u00e1n directamente asociados a la falta de acceso a terapias espec\u00edficas.<\/p>\n\n\n\n<p>Uno de los focos de mayor preocupaci\u00f3n es la situaci\u00f3n de la Nueva EPS. De acuerdo con los datos analizados, m\u00e1s de 530 muertes se registraron en usuarios afiliados a esta entidad, donde actualmente hay cerca de 16.000 pacientes con enfermedades raras.<\/p>\n\n\n\n<p>Gil calific\u00f3 como alarmante esta situaci\u00f3n, al se\u00f1alar que, pese a no ser la EPS con mayor n\u00famero de afiliados con estas patolog\u00edas, s\u00ed presenta indicadores de mortalidad elevados.<\/p>\n\n\n\n<p>El directivo tambi\u00e9n advirti\u00f3 que los pacientes se encuentran \u201cliteralmente a la deriva\u201d, ante la falta de seguimiento y an\u00e1lisis de las causas de mortalidad, tanto por parte del Ministerio de Salud como de la misma EPS.<\/p>\n\n\n\n<p>Esta preocupaci\u00f3n ya hab\u00eda sido expuesta ante el Congreso de la Rep\u00fablica, donde se alert\u00f3 sobre la necesidad de fortalecer la vigilancia y garantizar la atenci\u00f3n integral a personas con enfermedades hu\u00e9rfanas en Colombia.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>La Federaci\u00f3n Colombiana de Enfermedades Raras (Fecoer) encendi\u00f3 las alarmas al calificar como una \u201curgencia nacional\u201d la mortalidad de pacientes con estas patolog\u00edas en el pa\u00eds. Entre el 1 de enero y el 13 de diciembre de 2025, se registraron 2.436 fallecimientos. Seg\u00fan la organizaci\u00f3n, muchas de estas muertes estar\u00edan relacionadas con barreras de acceso [&hellip;]<\/p>\n","protected":false},"author":2,"featured_media":97704,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[28,32],"tags":[],"class_list":["post-97703","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 v26.6 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>\u00bfCu\u00e1ntas personas con enfermedades raras en Colombia? -<\/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\/cuantas-personas-con-enfermedades-raras-en-colombia\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"\u00bfCu\u00e1ntas personas con enfermedades raras en Colombia? 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