{"id":3489,"date":"2018-01-30T10:04:46","date_gmt":"2018-01-30T10:04:46","guid":{"rendered":"https:\/\/sindromecharge.es\/index.php\/2018\/01\/30\/ya-esta-disponible-el-video-del-dia-mundial-de-las-er-de-eurordis\/"},"modified":"2018-01-30T10:04:46","modified_gmt":"2018-01-30T10:04:46","slug":"ya-esta-disponible-el-video-del-dia-mundial-de-las-er-de-eurordis","status":"publish","type":"post","link":"https:\/\/sindromecharge.es\/index.php\/2018\/01\/30\/ya-esta-disponible-el-video-del-dia-mundial-de-las-er-de-eurordis\/","title":{"rendered":"\u00a1Ya est\u00e1 disponible el v\u00eddeo del D\u00eda Mundial de las ER de EURORDIS!"},"content":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: <\/p>\n<p>&nbsp;<\/p>\n<p>Fuente: <span style=\"text-decoration: underline\"><a href=\"https:\/\/www.rarediseaseday.org\/videos\" target=\"_blank\">EURORDIS<\/a><\/span> | EURORDIS ha presentado el v\u00eddeo de la campa\u00f1a por el D\u00eda Mundial de las Enfermedades Raras. En \u00e9l se presenta pacientes y familiares, investigadores y doctores que muestran sus rarezas. El video muestra la amplia gama de personas involucradas en la causa y, junto con su apoyo, pueden ser una voz fuerte para un mayor progreso en la investigaci\u00f3n de enfermedades raras.<\/p>\n<p>Lea historias de las estrellas del video: Enzo, de 5 a\u00f1os, que vive con el s\u00edndrome miast\u00e9nico cong\u00e9nito, Yara, una investigadora de enfermedades raras, Annie, que vive con la neuropat\u00eda \u00f3ptica hereditaria de leber, Alexandre, que vive con fibrodisplasia osificante progressiva, y su padre Antoine. Gracias tambi\u00e9n a Zo\u00e9, que vive con el s\u00edndrome miast\u00e9nico cong\u00e9nito, a Sylvain, un m\u00e9dico que tiene experiencia con el diagn\u00f3stico de enfermedades raras, ya Mirina, que vive con Ehler-Danlos &#8230; \u00a1las biograf\u00edas llegar\u00e1n pronto!<\/p>\n<p>\u00a1Comparte este video en las redes sociales y con tus amigos y familiares para ayudar a mostrar tu solidaridad con las personas que viven con enfermedades raras y difundir el D\u00eda de las Enfermedades Raras el 28 de febrero de 2018!<\/p>\n<p style=\"text-align: right\"><span style=\"font-style: normal;font-weight: 400\">Fuente:&nbsp;<\/span><span style=\"font-weight: 400;font-style: normal\"><a href=\"https:\/\/www.rarediseaseday.org\/videos\" target=\"_blank\">EURORDIS<\/a>.<\/span><\/p>\n<p style=\"text-align: right\">\u00daltima actualizaci\u00f3n: 30\/01\/2018.<\/p>\n<p>&nbsp;<\/p>\n<p>Fuente: FEDER <a href=\"https:\/\/enfermedades-raras.org\/index.php\/actualidad\/noticias-eventos\/2-feder\/9990-%C2%A1ya-est%C3%A1-disponible-el-v%C3%ADdeo-del-d%C3%ADa-mundial-de-las-er-de-eurordis\" target=\"_blank\">\u00a1Ya est\u00e1 disponible el v\u00eddeo del D\u00eda Mundial de las ER de EURORDIS!<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: &nbsp; Fuente: EURORDIS | EURORDIS ha presentado el v\u00eddeo de la campa\u00f1a por el D\u00eda Mundial de las Enfermedades Raras. En \u00e9l se presenta pacientes y familiares, investigadores y doctores que muestran sus rarezas. El video muestra la amplia gama de personas involucradas [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[8],"tags":[36],"class_list":["post-3489","post","type-post","status-publish","format-standard","hentry","category-noticias","tag-enfermedades-raras"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.2 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>\u00a1Ya est\u00e1 disponible el v\u00eddeo del D\u00eda Mundial de las ER de EURORDIS! - Asociaci\u00f3n Espa\u00f1ola S\u00edndrome de Charge<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/sindromecharge.es\/index.php\/2018\/01\/30\/ya-esta-disponible-el-video-del-dia-mundial-de-las-er-de-eurordis\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"\u00a1Ya est\u00e1 disponible el v\u00eddeo del D\u00eda Mundial de las ER de EURORDIS! - Asociaci\u00f3n Espa\u00f1ola S\u00edndrome de Charge\" \/>\n<meta property=\"og:description\" content=\"Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: &nbsp; Fuente: EURORDIS | EURORDIS ha presentado el v\u00eddeo de la campa\u00f1a por el D\u00eda Mundial de las Enfermedades Raras. 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