{"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 Asociaci\u00f3n Espa\u00f1ola de Porfiria, presidenta de la Asociaci\u00f3n ADIBI. Vicepresidenta de la Federaci\u00f3n Espa\u00f1ola de Enfermedades Raras, FEDER, patrona de la Fundaci\u00f3n para la Investigaci\u00f3n<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,"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}]}}