{"id":10223,"date":"2024-03-02T17:17:18","date_gmt":"2024-03-02T17:17:18","guid":{"rendered":"https:\/\/factor-h.org\/?p=10223"},"modified":"2024-03-02T17:17:19","modified_gmt":"2024-03-02T17:17:19","slug":"hd-in-the-news-ehdn-march-newsletter","status":"publish","type":"post","link":"https:\/\/factor-h.org\/es\/hd-in-the-news-ehdn-march-newsletter","title":{"rendered":"HD en las noticias: Bolet\u00edn de marzo de EHDN"},"content":{"rendered":"<p>En los recientes <a href=\"http:\/\/chrome-extension:\/\/efaidnbmnnnibpcajpcglclefindmkaj\/https:\/\/ehdn.org\/wp-content\/uploads\/2024\/03\/EHDN-NL-51-Mar2024.pdf\" target=\"_blank\" rel=\"noopener\" title=\"\">Bolet\u00edn EHDN,<\/a> El trabajo de Factor-H se presenta en dos art\u00edculos: el primero presenta el <a href=\"https:\/\/factor-h.org\/es\/gratitude-day-celebrating-the-anniversary-of-the-discovery-of-the-huntingtin-gene\/\" target=\"_blank\" rel=\"noopener\" title=\"\">D\u00eda de la Gratitud 2024<\/a> campa\u00f1a; el segundo es de Alex Fisher, quien cuenta su historia de su llegada a Venezuela y el trabajo que realiza junto a Factor-H &amp; Habitat LUZ en Maracaibo para lanzar un programa de cuidador integral enfocado a personas que viven en condiciones de extrema vulnerabilidad. Su narrativa es poderosa, conmovedora y llena de pasi\u00f3n. Alex lleg\u00f3 con inter\u00e9s y curiosidad y se fue como una persona cambiada, tanto a nivel personal como profesional. R\u00e1pidamente se gan\u00f3 el amor, el respeto y la confianza, dif\u00edciles de obtener de estas familias, a trav\u00e9s de su amabilidad, compasi\u00f3n y sinceridad. Lea su historia y comun\u00edquese con nosotros si desea unirse a su causa para brindar alivio a los cuidadores en Venezuela.<\/p>\n\n\n\n<p><\/p>\n\n\n\n<div data-wp-interactive=\"core\/file\" class=\"wp-block-file\"><object data-wp-bind--hidden=\"!state.hasPdfPreview\" hidden class=\"wp-block-file__embed\" data=\"https:\/\/factor-h.org\/wp-content\/uploads\/2024\/03\/EHDN-NL-51-Mar2024.pdf\" type=\"application\/pdf\" style=\"width:100%;height:600px\" aria-label=\"Incrustado de Embed de EHDN-NL-51-Mar2024..\"><\/object><a id=\"wp-block-file--media-8a9a3206-5751-4e05-8cd1-cf3de4b2070c\" href=\"https:\/\/factor-h.org\/wp-content\/uploads\/2024\/03\/EHDN-NL-51-Mar2024.pdf\">EHDN-NL-51-Mar2024<\/a><a href=\"https:\/\/factor-h.org\/wp-content\/uploads\/2024\/03\/EHDN-NL-51-Mar2024.pdf\" class=\"wp-block-file__button\" download aria-describedby=\"wp-block-file--media-8a9a3206-5751-4e05-8cd1-cf3de4b2070c\">Descargar<\/a><\/div>\n\n\n\n<h2 class=\"wp-block-heading\"><strong>Charla TEDx de Charles Sabine<\/strong><\/h2>\n\n\n\n<p>M\u00e1s abajo en el bolet\u00edn de EHDN puede ver una descripci\u00f3n de la charla de Charles Sabine para TEDx sobre la EH, su experiencia familiar personal con la enfermedad y su activismo para mejorar las vidas y la atenci\u00f3n de las familias con EH en todo el mundo. En esta presentaci\u00f3n personal, Charles habla sobre la p\u00e9rdida de su hermano a causa de la EH, su propio diagn\u00f3stico, su trabajo como corresponsal de guerra en el extranjero, su activismo a trav\u00e9s de la <a href=\"https:\/\/www.hiddennomore.com\/\" target=\"_blank\" rel=\"noopener\" title=\"\">No m\u00e1s escondido<\/a> Fundaci\u00f3n, encuentro con el Papa Francisco en 2017, y su participaci\u00f3n en investigaciones cl\u00ednicas y ensayos terap\u00e9uticos. <\/p>\n\n\n\n<p>Esta es una charla importante claramente pronunciada por uno de los defensores de la EH m\u00e1s carism\u00e1ticos e importantes del mundo.<\/p>\n\n\n\n<p>\u00a1Mire su charla a continuaci\u00f3n y comp\u00e1rtala ampliamente dentro y fuera de la comunidad HD!<\/p>\n\n\n\n<figure class=\"wp-block-embed is-type-video is-provider-youtube wp-block-embed-youtube wp-embed-aspect-16-9 wp-has-aspect-ratio\"><div class=\"wp-block-embed__wrapper\">\n<iframe title=\"La capacidad ilimitada de cada ser humano | Carlos Sabino | TEDxBa\u00f1o\" width=\"800\" height=\"450\" src=\"https:\/\/www.youtube.com\/embed\/RsUfCKfyQYY?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" allowfullscreen><\/iframe>\n<\/div><\/figure>","protected":false},"excerpt":{"rendered":"<p>In the recent EHDN Newsletter, Factor-H work is featured in two articles &#8211; the first launches the 2024 Gratitude Day campaign; the second is by Alex Fisher, who tells her story of coming to Venezuela and the work she is conducting together with Factor-H &amp; Habitat LUZ in Maracaibo to launch a comprehensive caregiver program [&hellip;]<\/p>\n","protected":false},"author":3,"featured_media":10226,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_monsterinsights_skip_tracking":false,"_monsterinsights_sitenote_active":false,"_monsterinsights_sitenote_note":"","_monsterinsights_sitenote_category":0,"footnotes":""},"categories":[30,98,9,253,55],"tags":[131,158,290,263,139],"class_list":["post-10223","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-factor-h","category-in-the-press","category-general-news","category-testimonial","category-the-disease","tag-factor-h","tag-hd","tag-hddennomore","tag-hdgratitudeday","tag-huntingtondisease"],"aioseo_notices":[],"_links":{"self":[{"href":"https:\/\/factor-h.org\/es\/wp-json\/wp\/v2\/posts\/10223","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/factor-h.org\/es\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/factor-h.org\/es\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/factor-h.org\/es\/wp-json\/wp\/v2\/users\/3"}],"replies":[{"embeddable":true,"href":"https:\/\/factor-h.org\/es\/wp-json\/wp\/v2\/comments?post=10223"}],"version-history":[{"count":2,"href":"https:\/\/factor-h.org\/es\/wp-json\/wp\/v2\/posts\/10223\/revisions"}],"predecessor-version":[{"id":10227,"href":"https:\/\/factor-h.org\/es\/wp-json\/wp\/v2\/posts\/10223\/revisions\/10227"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/factor-h.org\/es\/wp-json\/wp\/v2\/media\/10226"}],"wp:attachment":[{"href":"https:\/\/factor-h.org\/es\/wp-json\/wp\/v2\/media?parent=10223"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/factor-h.org\/es\/wp-json\/wp\/v2\/categories?post=10223"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/factor-h.org\/es\/wp-json\/wp\/v2\/tags?post=10223"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}