{"id":6346,"date":"2021-11-12T22:54:35","date_gmt":"2021-11-12T21:54:35","guid":{"rendered":"https:\/\/aliber.org\/web\/?p=6346"},"modified":"2021-11-12T22:54:35","modified_gmt":"2021-11-12T21:54:35","slug":"pacientes-con-eerr-piden-al-gobierno-del-ecuador-ser-visibilizados","status":"publish","type":"post","link":"https:\/\/aliber.org\/web\/2021\/11\/12\/pacientes-con-eerr-piden-al-gobierno-del-ecuador-ser-visibilizados\/","title":{"rendered":"Pacientes con EERR piden al Gobierno del Ecuador ser visibilizados"},"content":{"rendered":"<p>La Fundaci\u00f3n Ecuatoriana de Pacientes con Enfermedades de Dep\u00f3sito Lisosomal, entidad miembro de la Alianza Iberoamericana de enfermedades Raras, Hu\u00e9rfanas o Poco Frecuentes \u2013 ALIBER, elev\u00f3 a la Presidencia de la Rep\u00fablica del Ecuador la solicitud de ser recibidos junto con un grupo de Pacientes con Enfermedades Raras &#8211; EERR, quienes quieren elevar personalmente la petici\u00f3n de ser considerados como un grupo prioritario por parte de las organizaciones de salud, tal como la ley y la constituci\u00f3n de ese pa\u00eds los proclaman.<\/p>\n<p>En este orden de ideas, radicaron una solicitud para visibilizar la existencia de este grupo de personas con diagn\u00f3stico de Enfermedades Raras que a menudo son confundidas con Enfermedades Catastr\u00f3ficas o Discapacidades; con esta gesti\u00f3n pretenden sensibilizar a las autoridades para que tomen decisiones en favor de establecer pol\u00edticas de Estado.<\/p>\n<p>Compartimos el comunicado:<\/p>\n<p><img fetchpriority=\"high\" decoding=\"async\" class=\"aligncenter wp-image-6370 size-full\" src=\"https:\/\/aliber.org\/web\/wp-content\/uploads\/2021\/11\/WhatsApp-Image-2021-11-12-at-5.03.37-PM.jpeg\" alt=\"\" width=\"998\" height=\"1280\" \/><\/p>\n<p><img decoding=\"async\" class=\"wp-image-6358  alignleft\" src=\"https:\/\/aliber.org\/web\/wp-content\/uploads\/2021\/11\/carta-2-1.jpg\" alt=\"\" width=\"828\" height=\"1038\" \/><\/p>\n<p>&nbsp;<\/p>\n<p><img decoding=\"async\" class=\"wp-image-6371  alignleft\" src=\"https:\/\/aliber.org\/web\/wp-content\/uploads\/2021\/11\/WhatsApp-Image-2021-11-12-at-5.02.13-PM.jpeg\" alt=\"\" width=\"819\" height=\"1069\" \/><\/p>\n<p>&nbsp;<\/p>\n<p><img loading=\"lazy\" decoding=\"async\" class=\"wp-image-6360  alignleft\" src=\"https:\/\/aliber.org\/web\/wp-content\/uploads\/2021\/11\/carta-4-1.jpg\" alt=\"\" width=\"817\" height=\"962\" \/><\/p>\n<p>&nbsp;<\/p>\n<p><img loading=\"lazy\" decoding=\"async\" class=\"wp-image-6372  alignleft\" src=\"https:\/\/aliber.org\/web\/wp-content\/uploads\/2021\/11\/WhatsApp-Image-2021-11-12-at-5.02.13-PM-1.jpeg\" alt=\"\" width=\"820\" height=\"1073\" \/><\/p>\n<p>&nbsp;<\/p>\n<p><img loading=\"lazy\" decoding=\"async\" class=\"wp-image-6362  alignleft\" src=\"https:\/\/aliber.org\/web\/wp-content\/uploads\/2021\/11\/carta-6-1.jpg\" alt=\"\" width=\"823\" height=\"1047\" \/><\/p>\n<p><img loading=\"lazy\" decoding=\"async\" class=\"wp-image-6374  alignleft\" src=\"https:\/\/aliber.org\/web\/wp-content\/uploads\/2021\/11\/WhatsApp-Image-2021-11-12-at-5.02.13-PM-2.jpeg\" alt=\"\" width=\"815\" height=\"1031\" \/><\/p>\n<p>&nbsp;<\/p>\n<p>&nbsp;<\/p>\n<p>&nbsp;<\/p>\n<p>&nbsp;<\/p>\n<p>&nbsp;<\/p>\n<p>&nbsp;<\/p>\n<p>&nbsp;<\/p>\n<p>&nbsp;<\/p>\n<p>&nbsp;<\/p>\n<p>&nbsp;<\/p>\n<p><img loading=\"lazy\" decoding=\"async\" class=\"wp-image-6364  alignleft\" src=\"https:\/\/aliber.org\/web\/wp-content\/uploads\/2021\/11\/carta-8-1.jpg\" alt=\"\" width=\"828\" height=\"1078\" \/><\/p>\n<p>&nbsp;<\/p>\n<p><img loading=\"lazy\" decoding=\"async\" class=\"aligncenter wp-image-6375 size-full\" src=\"https:\/\/aliber.org\/web\/wp-content\/uploads\/2021\/11\/WhatsApp-Image-2021-11-12-at-5.38.19-PM.jpeg\" alt=\"\" width=\"1003\" height=\"1280\" \/><\/p>\n<p>&nbsp;<\/p>\n<p>&nbsp;<\/p>\n<p>&nbsp;<\/p>\n<p>&nbsp;<\/p>\n<p>&nbsp;<\/p>\n<p>&nbsp;<\/p>\n","protected":false},"excerpt":{"rendered":"<p>La Fundaci\u00f3n Ecuatoriana de Pacientes con Enfermedades de Dep\u00f3sito Lisosomal, entidad miembro de la Alianza Iberoamericana de enfermedades Raras, Hu\u00e9rfanas o Poco Frecuentes \u2013 ALIBER, elev\u00f3 a la Presidencia de<a href=\"https:\/\/aliber.org\/web\/2021\/11\/12\/pacientes-con-eerr-piden-al-gobierno-del-ecuador-ser-visibilizados\/\">[&#8230;]<\/a><\/p>\n","protected":false},"author":2,"featured_media":6369,"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":[7],"tags":[],"class_list":["post-6346","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-socios"],"_links":{"self":[{"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/posts\/6346","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\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/comments?post=6346"}],"version-history":[{"count":0,"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/posts\/6346\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/aliber.org\/web\/wp-json\/"}],"wp:attachment":[{"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/media?parent=6346"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/categories?post=6346"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/tags?post=6346"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}