{"id":10040,"date":"2025-09-02T14:59:15","date_gmt":"2025-09-02T12:59:15","guid":{"rendered":"https:\/\/aliber.org\/web\/?p=10040"},"modified":"2025-09-04T16:54:28","modified_gmt":"2025-09-04T14:54:28","slug":"%f0%9d%97%96%f0%9d%97%bc%f0%9d%97%bb%f0%9d%97%bc%f0%9d%97%b0%f0%9d%97%b2-%f0%9d%97%b9%f0%9d%97%ae%f0%9d%98%80-%f0%9d%97%b2%f0%9d%97%bb%f0%9d%98%81%f0%9d%97%b6%f0%9d%97%b1%f0%9d%97%ae%f0%9d%97%b1-7","status":"publish","type":"post","link":"https:\/\/aliber.org\/web\/2025\/09\/02\/%f0%9d%97%96%f0%9d%97%bc%f0%9d%97%bb%f0%9d%97%bc%f0%9d%97%b0%f0%9d%97%b2-%f0%9d%97%b9%f0%9d%97%ae%f0%9d%98%80-%f0%9d%97%b2%f0%9d%97%bb%f0%9d%98%81%f0%9d%97%b6%f0%9d%97%b1%f0%9d%97%ae%f0%9d%97%b1-7\/","title":{"rendered":"\ud835\uddd6\ud835\uddfc\ud835\uddfb\ud835\uddfc\ud835\uddf0\ud835\uddf2 \ud835\uddf9\ud835\uddee\ud835\ude00 \ud835\uddf2\ud835\uddfb\ud835\ude01\ud835\uddf6\ud835\uddf1\ud835\uddee\ud835\uddf1\ud835\uddf2\ud835\ude00 \ud835\uddfe\ud835\ude02\ud835\uddf2 \ud835\uddf3\ud835\uddfc\ud835\uddff\ud835\uddfa\ud835\uddee\ud835\uddfb \ud835\uddfd\ud835\uddee\ud835\uddff\ud835\ude01\ud835\uddf2 \ud835\uddf1\ud835\uddf2 \ud835\uddd4\ud835\udddf\ud835\udddc\ud835\uddd5\ud835\uddd8\ud835\udde5"},"content":{"rendered":"
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El \ud835\udc0e\ud835\udc1b\ud835\udc2c\ud835\udc1e\ud835\udc2b\ud835\udc2f\ud835\udc1a\ud835\udc2d\ud835\udc28\ud835\udc2b\ud835\udc22\ud835\udc28 \ud835\udc08\ud835\udc27\ud835\udc2d\ud835\udc1e\ud835\udc2b\ud835\udc22\ud835\udc27\ud835\udc2c\ud835\udc2d\ud835\udc22\ud835\udc2d\ud835\udc2e\ud835\udc1c\ud835\udc22\ud835\udc28\ud835\udc27\ud835\udc1a\ud835\udc25 \ud835\udc1d\ud835\udc1e Enfermedades Hu\u00e9rfanas<\/strong> -\ud835\udc04\ud835\udc0d\ud835\udc07\ud835\udc14- es una corporaci\u00f3n sin \u00e1nimo de lucro, cuyo objetivo es articular de manera eficiente y arm\u00f3nica los esfuerzos privados de los diferentes actores que directa o indirectamente intervengan en el sistema de salud, bajo el objetivo com\u00fan de dise\u00f1ar, proponer e incidir pol\u00edticas que mejoren la calidad de la atenci\u00f3n de los pacientes con Enfermedades Hu\u00e9rfanas.<\/p>\n

El Observatorio se constituye como una instancia interinstitucional, abierta a todos aquellos interesados en mejorar la perspectiva y calidad de vida de los pacientes con diagn\u00f3stico de EH en Colombia, mediante la incidencia en pol\u00edticas p\u00fablicas y en la promoci\u00f3n de la comprensi\u00f3n general de las EH en el \u00e1mbito p\u00fablico.<\/p>\n

\u00a1\u00danete a ALIBER! escr\u00edbenos a
\n\ud835\udc1c\ud835\udc28\ud835\udc26\ud835\udc2e\ud835\udc27\ud835\udc22\ud835\udc1c\ud835\udc1a\ud835\udc1c\ud835\udc22\ud835\udc28\ud835\udc27\ud835\udc1e\ud835\udc2c@\ud835\udc1a\ud835\udc25\ud835\udc22\ud835\udc1b\ud835\udc1e\ud835\udc2b.\ud835\udc28\ud835\udc2b\ud835\udc20<\/a><\/p>\n

para que te guiemos en el proceso de adherirte a nuestra Alianza.<\/p>\n

Somos una red que agremia m\u00e1s de 700 organizaciones de pacientes con Enfermedades Raras, presente en 19 pa\u00edses de Iberoam\u00e9rica, que coordina acciones para fortalecer el movimiento asociativo, dar visibilidad a las EERR y representar a las personas con Enfermedades Poco Frecuentes de Iberoam\u00e9rica ante organismos locales, regionales, nacionales e internacionales, creando un espacio de colaboraci\u00f3n conjunta y permanente para compartir conocimientos, experiencias y buenas pr\u00e1cticas en las \u00e1reas social, sanitaria, educativa y laboral.<\/p>\n<\/div>\n

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<\/h4>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n","protected":false},"excerpt":{"rendered":"

El \ud835\udc0e\ud835\udc1b\ud835\udc2c\ud835\udc1e\ud835\udc2b\ud835\udc2f\ud835\udc1a\ud835\udc2d\ud835\udc28\ud835\udc2b\ud835\udc22\ud835\udc28 \ud835\udc08\ud835\udc27\ud835\udc2d\ud835\udc1e\ud835\udc2b\ud835\udc22\ud835\udc27\ud835\udc2c\ud835\udc2d\ud835\udc22\ud835\udc2d\ud835\udc2e\ud835\udc1c\ud835\udc22\ud835\udc28\ud835\udc27\ud835\udc1a\ud835\udc25 \ud835\udc1d\ud835\udc1e Enfermedades Hu\u00e9rfanas -\ud835\udc04\ud835\udc0d\ud835\udc07\ud835\udc14- es una corporaci\u00f3n sin \u00e1nimo de lucro, cuyo objetivo es articular de manera eficiente y arm\u00f3nica los esfuerzos privados de los diferentes actores[…]<\/a><\/p>\n","protected":false},"author":1,"featured_media":10041,"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":[2,138,7],"tags":[],"class_list":["post-10040","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-aliber","category-noticias","category-socios"],"_links":{"self":[{"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/posts\/10040","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=10040"}],"version-history":[{"count":4,"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/posts\/10040\/revisions"}],"predecessor-version":[{"id":10113,"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/posts\/10040\/revisions\/10113"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/media\/10041"}],"wp:attachment":[{"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/media?parent=10040"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/categories?post=10040"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/tags?post=10040"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}