{"id":10976,"date":"2026-02-20T21:03:52","date_gmt":"2026-02-20T20:03:52","guid":{"rendered":"https:\/\/aliber.org\/web\/?p=10976"},"modified":"2026-02-27T21:15:26","modified_gmt":"2026-02-27T20:15:26","slug":"plan-global-de-enfermedades-huerfanas-trascendiendo-fronteras","status":"publish","type":"post","link":"https:\/\/aliber.org\/web\/2026\/02\/20\/plan-global-de-enfermedades-huerfanas-trascendiendo-fronteras\/","title":{"rendered":"PLAN GLOBAL DE ENFERMEDADES HU\u00c9RFANAS: TRASCENDIENDO FRONTERAS"},"content":{"rendered":"<p>Debra Bell\u00f3n, Responsable de Relaciones Estrat\u00e9gicas de Rare Diseases International (RDI), present\u00f3 un an\u00e1lisis integral sobre los aspectos m\u00e1s relevantes de la hist\u00f3rica Resoluci\u00f3n de la Organizaci\u00f3n Mundial de la Salud (OMS) en materia de Enfermedades Raras.<\/p>\n<p>Durante su intervenci\u00f3n, realiz\u00f3 un recorrido por los avances alcanzados, los desaf\u00edos pendientes y el impacto que esta resoluci\u00f3n representa para millones de personas en el mundo. Subray\u00f3 la necesidad de traducir los compromisos globales en acciones concretas a nivel nacional y regional, garantizando pol\u00edticas p\u00fablicas sostenibles, acceso equitativo a diagn\u00f3stico oportuno, tratamientos y atenci\u00f3n integral.<\/p>\n<p>Adem\u00e1s, enfatiz\u00f3 la importancia de una hoja de ruta clara hacia el futuro: articulaci\u00f3n real entre Estados, sistemas de salud, comunidad cient\u00edfica y organizaciones de pacientes; generaci\u00f3n de datos; fortalecimiento de capacidades; y modelos de atenci\u00f3n centrados en las personas y sus familias.<\/p>\n<p>Un llamado firme a pasar del reconocimiento internacional a la implementaci\u00f3n efectiva.<\/p>\n<p>Porque las personas con enfermedades raras no pueden seguir esperando.<\/p>\n<p>&nbsp;<\/p>\n<p><img fetchpriority=\"high\" decoding=\"async\" class=\"aligncenter wp-image-10977 \" src=\"https:\/\/aliber.org\/web\/wp-content\/uploads\/2026\/02\/Debra.jpeg\" alt=\"\" width=\"877\" height=\"493\" srcset=\"https:\/\/aliber.org\/web\/wp-content\/uploads\/2026\/02\/Debra.jpeg 2048w, https:\/\/aliber.org\/web\/wp-content\/uploads\/2026\/02\/Debra-300x169.jpeg 300w, https:\/\/aliber.org\/web\/wp-content\/uploads\/2026\/02\/Debra-1024x576.jpeg 1024w, https:\/\/aliber.org\/web\/wp-content\/uploads\/2026\/02\/Debra-768x432.jpeg 768w, https:\/\/aliber.org\/web\/wp-content\/uploads\/2026\/02\/Debra-1536x864.jpeg 1536w\" sizes=\"(max-width: 877px) 100vw, 877px\" \/><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Debra Bell\u00f3n, Responsable de Relaciones Estrat\u00e9gicas de Rare Diseases International (RDI), present\u00f3 un an\u00e1lisis integral sobre los aspectos m\u00e1s relevantes de la hist\u00f3rica Resoluci\u00f3n de la Organizaci\u00f3n Mundial de la<a href=\"https:\/\/aliber.org\/web\/2026\/02\/20\/plan-global-de-enfermedades-huerfanas-trascendiendo-fronteras\/\">[&#8230;]<\/a><\/p>\n","protected":false},"author":1,"featured_media":10977,"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":[2,32],"tags":[],"class_list":["post-10976","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-aliber","category-diamundialeerr"],"_links":{"self":[{"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/posts\/10976","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=10976"}],"version-history":[{"count":1,"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/posts\/10976\/revisions"}],"predecessor-version":[{"id":10978,"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/posts\/10976\/revisions\/10978"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/media\/10977"}],"wp:attachment":[{"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/media?parent=10976"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/categories?post=10976"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/tags?post=10976"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}