{"id":8507,"date":"2023-11-22T02:41:48","date_gmt":"2023-11-22T01:41:48","guid":{"rendered":"https:\/\/aliber.org\/web\/?p=8507"},"modified":"2023-11-26T22:18:18","modified_gmt":"2023-11-26T21:18:18","slug":"palabras-de-fide-miron-en-el-foro-de-alto-nivel-guatemala","status":"publish","type":"post","link":"https:\/\/aliber.org\/web\/2023\/11\/22\/palabras-de-fide-miron-en-el-foro-de-alto-nivel-guatemala\/","title":{"rendered":"Fide Mir\u00f3n, Federaci\u00f3n Espa\u00f1ola de Enfermedades Raras \u2013 FEDER, en el Foro de Alto Nivel-Encuentro de L\u00edderes del Movimiento Asociativo (Lanzamiento Informe Estudio ENSERio Centroam\u00e9rica)."},"content":{"rendered":"\t\t<div data-elementor-type=\"wp-post\" data-elementor-id=\"8507\" class=\"elementor elementor-8507\" data-elementor-post-type=\"post\">\n\t\t\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-3183c5b elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"3183c5b\" data-element_type=\"section\" data-e-type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-70e7f0ea\" data-id=\"70e7f0ea\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-2d213604 elementor-widget elementor-widget-text-editor\" data-id=\"2d213604\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<p>Fide Mir\u00f3n<\/p><ul><li>Paciente de Porfiria Eritropoyetica.<\/li><li>Desde 2002, ha participado activamente en diversas organizaciones enfocadas en los derechos de personas con discapacidades y enfermedades raras.<\/li><li>Actualmente es presidenta de la Asociaci\u00f3n Espa\u00f1ola de Porfiria, presidenta de la Asociaci\u00f3n ADIBI.<\/li><li>Vicepresidenta de la Federaci\u00f3n Espa\u00f1ola de Enfermedades Raras, FEDER, patrona de la Fundaci\u00f3n para la Investigaci\u00f3n FEDER.<\/li><li>Vicepresidenta de Cocemfe-Alicante.<\/li><li>Patrona de la Fundaci\u00f3n Juan Carlos P\u00e9rez Santamar\u00eda.<\/li><li>Consejera Provincial de Cocemfe Comunidad Valenciana.<\/li><li>Miembro del Observatorio Legislativo de Enfermedades Raras y Medicamentos Hu\u00e9rfanos.<\/li><li>Ha colaborado y participado en diversas publicaciones tanto m\u00e9dicas como sociales a nivel nacional como internacional, como en diferentes medios de comunicaci\u00f3n.<\/li><li>Se ha destacado en la divulgaci\u00f3n sobre Enfermedades Raras y discapacidad, enfoc\u00e1ndose en estudiantes, profesionales de la salud y asociaciones. Su trabajo motiva a unir esfuerzos para lograr una mayor inclusi\u00f3n de personas con discapacidades y enfermedades poco frecuentes.<\/li><\/ul><p>#EnfermedadesRaras #Genetica #Genes #RareDiseases #RareDisease #eerr<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-73dfa83 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"73dfa83\" data-element_type=\"section\" data-e-type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-716725a\" data-id=\"716725a\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-a671a2b elementor-widget elementor-widget-eael-sticky-video\" data-id=\"a671a2b\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"eael-sticky-video.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<div class=\"eael-sticky-video-wrapper eaelsv-overlay-visibility-\"><div class=\"eael-sticky-video-player2\" data-sticky=\"yes\" data-position=\"bottom-right\" data-sheight=\"169\" data-swidth=\"300\" data-scroll_height=\"70\" data-autoplay=\"no\" data-overlay=\"no\"><video class=\"eaelsv-player\" id=\"eaelsv-player-a671a2b\" playsinline controls data-plyr-config=\"{&quot;autoplay&quot;:0, &quot;muted&quot;:0, &quot;loop&quot;: {&quot;active&quot;: false}}\">\n\t\t\t<source src=\"https:\/\/aliber.org\/web\/wp-content\/uploads\/2023\/11\/Fide-Miron.mp4#t=,\" type=\"video\/mp4\" \/>\n\t\t<\/video>\n\t\t\t\t<span class=\"eaelsv-sticky-player-close\"><i class=\"fas fa-times-circle\"><\/i><\/span>\n\t\t\t<\/div>\n\t\t<\/div>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<\/div>\n\t\t","protected":false},"excerpt":{"rendered":"<p>Fide Mir\u00f3n Paciente de Porfiria Eritropoyetica. Desde 2002, ha participado activamente en diversas organizaciones enfocadas en los derechos de personas con discapacidades y enfermedades raras. Actualmente es presidenta de la<a href=\"https:\/\/aliber.org\/web\/2023\/11\/22\/palabras-de-fide-miron-en-el-foro-de-alto-nivel-guatemala\/\">[&#8230;]<\/a><\/p>\n","protected":false},"author":2,"featured_media":8510,"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],"tags":[],"class_list":["post-8507","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-aliber"],"_links":{"self":[{"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/posts\/8507","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=8507"}],"version-history":[{"count":9,"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/posts\/8507\/revisions"}],"predecessor-version":[{"id":8765,"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/posts\/8507\/revisions\/8765"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/media\/8510"}],"wp:attachment":[{"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/media?parent=8507"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/categories?post=8507"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/tags?post=8507"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}