{"id":9749,"date":"2025-05-08T15:17:40","date_gmt":"2025-05-08T13:17:40","guid":{"rendered":"https:\/\/aliber.org\/web\/?p=9749"},"modified":"2025-05-08T15:18:25","modified_gmt":"2025-05-08T13:18:25","slug":"equipos-de-trabajo-en-enfermedades-raras-experiencias-de-la-region","status":"publish","type":"post","link":"https:\/\/aliber.org\/web\/2025\/05\/08\/equipos-de-trabajo-en-enfermedades-raras-experiencias-de-la-region\/","title":{"rendered":"Equipos de trabajo en enfermedades raras: experiencias de la regi\u00f3n"},"content":{"rendered":"<p>Moderaci\u00f3n: Jes\u00fas Navarro \u2013 Vicepresidente de ALIBER<\/p>\n<p>Esta mesa reuni\u00f3 a representantes t\u00e9cnicos de ministerios de salud y entidades p\u00fablicas de Colombia, Chile, Costa Rica, Cuba, Ecuador, Honduras y Panam\u00e1, con el objetivo de compartir experiencias en la organizaci\u00f3n y fortalecimiento de equipos nacionales para el abordaje de las enfermedades raras.<\/p>\n<p>Durante la sesi\u00f3n se presentaron modelos de trabajo en vigilancia, prevenci\u00f3n, diagn\u00f3stico, atenci\u00f3n cl\u00ednica y gesti\u00f3n intersectorial, destacando los avances en la conformaci\u00f3n de unidades t\u00e9cnicas, protocolos de actuaci\u00f3n y marcos normativos.<\/p>\n<p>La mesa reflej\u00f3 un compromiso compartido por profesionalizar los equipos de salud, fortalecer capacidades institucionales y promover el trabajo colaborativo como base para construir respuestas nacionales m\u00e1s efectivas frente a las enfermedades raras.<\/p>\n<p><img fetchpriority=\"high\" decoding=\"async\" class=\"aligncenter wp-image-9750 size-full\" src=\"https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/05\/1-scaled.jpeg\" alt=\"\" width=\"1920\" height=\"2560\" srcset=\"https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/05\/1-scaled.jpeg 1920w, https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/05\/1-225x300.jpeg 225w, https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/05\/1-768x1024.jpeg 768w, https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/05\/1-1152x1536.jpeg 1152w, https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/05\/1-1536x2048.jpeg 1536w\" sizes=\"(max-width: 1920px) 100vw, 1920px\" \/><\/p>\n<p><img decoding=\"async\" class=\"aligncenter wp-image-9751 size-full\" src=\"https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/05\/m2-scaled.jpeg\" alt=\"\" width=\"2560\" height=\"1920\" srcset=\"https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/05\/m2-scaled.jpeg 2560w, https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/05\/m2-300x225.jpeg 300w, https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/05\/m2-1024x768.jpeg 1024w, https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/05\/m2-768x576.jpeg 768w, https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/05\/m2-1536x1152.jpeg 1536w, https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/05\/m2-2048x1536.jpeg 2048w, https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/05\/m2-285x214.jpeg 285w\" sizes=\"(max-width: 2560px) 100vw, 2560px\" \/><\/p>\n<p><img decoding=\"async\" class=\"aligncenter wp-image-9759 size-full\" src=\"https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/05\/m6-scaled.jpeg\" alt=\"\" width=\"1920\" height=\"2560\" srcset=\"https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/05\/m6-scaled.jpeg 1920w, https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/05\/m6-225x300.jpeg 225w, https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/05\/m6-768x1024.jpeg 768w, https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/05\/m6-1152x1536.jpeg 1152w, https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/05\/m6-1536x2048.jpeg 1536w\" sizes=\"(max-width: 1920px) 100vw, 1920px\" \/><\/p>\n<p><img loading=\"lazy\" decoding=\"async\" class=\"aligncenter wp-image-9760 size-full\" src=\"https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/05\/m7-scaled.jpeg\" alt=\"\" width=\"1920\" height=\"2560\" srcset=\"https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/05\/m7-scaled.jpeg 1920w, https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/05\/m7-225x300.jpeg 225w, https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/05\/m7-768x1024.jpeg 768w, https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/05\/m7-1152x1536.jpeg 1152w, https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/05\/m7-1536x2048.jpeg 1536w\" sizes=\"(max-width: 1920px) 100vw, 1920px\" \/><\/p>\n<p>&nbsp;<\/p>\n<p><img loading=\"lazy\" decoding=\"async\" class=\"aligncenter wp-image-9753 size-full\" src=\"https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/05\/m3-1-scaled.jpeg\" alt=\"\" width=\"1920\" height=\"2560\" srcset=\"https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/05\/m3-1-scaled.jpeg 1920w, https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/05\/m3-1-225x300.jpeg 225w, https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/05\/m3-1-768x1024.jpeg 768w, https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/05\/m3-1-1152x1536.jpeg 1152w, https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/05\/m3-1-1536x2048.jpeg 1536w\" sizes=\"(max-width: 1920px) 100vw, 1920px\" \/><\/p>\n<p><img loading=\"lazy\" decoding=\"async\" class=\"aligncenter wp-image-9754 size-full\" src=\"https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/05\/m4-scaled.jpeg\" alt=\"\" width=\"1920\" height=\"2560\" srcset=\"https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/05\/m4-scaled.jpeg 1920w, https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/05\/m4-225x300.jpeg 225w, https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/05\/m4-768x1024.jpeg 768w, https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/05\/m4-1152x1536.jpeg 1152w, https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/05\/m4-1536x2048.jpeg 1536w\" sizes=\"(max-width: 1920px) 100vw, 1920px\" \/><\/p>\n<p>&nbsp;<\/p>\n<p><img loading=\"lazy\" decoding=\"async\" class=\"aligncenter wp-image-9762 size-full\" src=\"https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/05\/m5-1-scaled.jpeg\" alt=\"\" width=\"1920\" height=\"2560\" srcset=\"https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/05\/m5-1-scaled.jpeg 1920w, https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/05\/m5-1-225x300.jpeg 225w, https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/05\/m5-1-768x1024.jpeg 768w, https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/05\/m5-1-1152x1536.jpeg 1152w, https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/05\/m5-1-1536x2048.jpeg 1536w\" sizes=\"(max-width: 1920px) 100vw, 1920px\" \/><\/p>\n<p>&nbsp;<\/p>\n<p><img loading=\"lazy\" decoding=\"async\" class=\"aligncenter wp-image-9752 size-full\" src=\"https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/05\/m3-scaled.jpeg\" alt=\"\" width=\"1920\" height=\"2560\" srcset=\"https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/05\/m3-scaled.jpeg 1920w, https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/05\/m3-225x300.jpeg 225w, https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/05\/m3-768x1024.jpeg 768w, https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/05\/m3-1152x1536.jpeg 1152w, https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/05\/m3-1536x2048.jpeg 1536w\" sizes=\"(max-width: 1920px) 100vw, 1920px\" \/><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Moderaci\u00f3n: Jes\u00fas Navarro \u2013 Vicepresidente de ALIBER Esta mesa reuni\u00f3 a representantes t\u00e9cnicos de ministerios de salud y entidades p\u00fablicas de Colombia, Chile, Costa Rica, Cuba, Ecuador, Honduras y Panam\u00e1,<a href=\"https:\/\/aliber.org\/web\/2025\/05\/08\/equipos-de-trabajo-en-enfermedades-raras-experiencias-de-la-region\/\">[&#8230;]<\/a><\/p>\n","protected":false},"author":1,"featured_media":9751,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_exactmetrics_skip_tracking":false,"_exactmetrics_sitenote_active":false,"_exactmetrics_sitenote_note":"","_exactmetrics_sitenote_category":0,"footnotes":""},"categories":[1],"tags":[],"class_list":["post-9749","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-sin-categoria"],"_links":{"self":[{"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/posts\/9749","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/comments?post=9749"}],"version-history":[{"count":2,"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/posts\/9749\/revisions"}],"predecessor-version":[{"id":9764,"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/posts\/9749\/revisions\/9764"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/media\/9751"}],"wp:attachment":[{"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/media?parent=9749"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/categories?post=9749"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/tags?post=9749"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}