{"id":2913,"date":"2017-06-02T10:03:19","date_gmt":"2017-06-02T10:03:19","guid":{"rendered":"https:\/\/sindromecharge.es\/index.php\/2017\/06\/02\/acompanamos-a-eurordis-en-su-escuela-de-verano\/"},"modified":"2017-06-02T10:03:19","modified_gmt":"2017-06-02T10:03:19","slug":"acompanamos-a-eurordis-en-su-escuela-de-verano","status":"publish","type":"post","link":"https:\/\/sindromecharge.es\/index.php\/2017\/06\/02\/acompanamos-a-eurordis-en-su-escuela-de-verano\/","title":{"rendered":"Acompa\u00f1amos a EURORDIS en su Escuela de Verano"},"content":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: <\/p>\n<p><p>La Organizaci\u00f3n Europea de Enfermedades Raras (EURORDIS) celebra por primera vez su Escuela de Verano en castellano. La cita, que tendr\u00e1 lugar entre el 5 y 9 de junio en Barcelona, cuenta con el apoyo de la Plataforma de Malalties Minorit\u00e0ries, el Centro de Investigaci\u00f3n Biom\u00e9dica en Red de Enfermedades Raras (CIBERER) y nuestra Federaci\u00f3n.<\/p>\n<p>Impulsada hace 9 a\u00f1os, la Escuela de Verano de EURORDIS ha formado a m\u00e1s de 300 participantes de m\u00e1s de 40 pa\u00edses en aspectos clave relativos a la investigaci\u00f3n: desde el desarrollo de ensayos cl\u00ednicos hasta el proceso de autorizaci\u00f3n y comercializaci\u00f3n de medicamentos, pasando por el marco regulatorio que regula estos procedimientos y las consideraciones \u00e9ticas que han de tenerse en cuenta.<\/p>\n<p>\u00abEl hecho de que se celebre por primera vez en castellano, permite que la escuela no s\u00f3lo se abra a las entidades europeas y espa\u00f1olas, sino tambi\u00e9n a las latinoamericanas\u00bb explica Juan Carri\u00f3n, Presidente de nuestra Federaci\u00f3n y Fundaci\u00f3n, quien adem\u00e1s ser\u00e1 el encargado de inaugurar la escuela.<\/p>\n<p>Junto a \u00e9l, nuestra Federaci\u00f3n participa en el programa de la jornada a trav\u00e9s de Anna Ripoll, Vocal de la Junta Directiva de FEDER, quien desarrollar\u00e1 el papel de los pacientes en la atenci\u00f3n de su salud, y Estrella Mayoral, Responsable de Atenci\u00f3n Directa, que profundizar\u00e1 en la labor que se lleva a cabo desde nuestro Servicio de Informaci\u00f3n y Orientaci\u00f3n.<\/p>\n<p>Adem\u00e1s, en un a\u00f1o marcado por la investigaci\u00f3n, es precisamente \u00e9sta el eje vertebrador del programa de la escuela, incluyendo aspectos que a todos nos ocupan: diagn\u00f3stico, ensayos cl\u00ednicos y desarrollo de terapias innovadoras. En todo este proceso, como sab\u00e9is, los pacientes est\u00e1n adquiriendo un papel cada vez m\u00e1s representativo como agentes que intervienen en el mismo.<\/p>\n<p style=\"text-align: right\">\u00daltima actualizaci\u00f3n: 02\/06\/2017.<\/p>\n<\/p>\n<p>Fuente: FEDER <a href=\"http:\/\/www.enfermedades-raras.org\/index.php\/actualidad\/noticias-eventos\/2-feder\/8451-acompa%C3%B1amos-a-eurordis-en-su-escuela-de-verano\" target=\"_blank\">Acompa\u00f1amos a EURORDIS en su Escuela de Verano<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: La Organizaci\u00f3n Europea de Enfermedades Raras (EURORDIS) celebra por primera vez su Escuela de Verano en castellano. La cita, que tendr\u00e1 lugar entre el 5 y 9 de junio en Barcelona, cuenta con el apoyo de la Plataforma de Malalties Minorit\u00e0ries, el Centro [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":"","_members_access_role":[],"_members_access_error":""},"categories":[8],"tags":[36],"class_list":["post-2913","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>Acompa\u00f1amos a EURORDIS en su Escuela de Verano - 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\/2017\/06\/02\/acompanamos-a-eurordis-en-su-escuela-de-verano\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Acompa\u00f1amos a EURORDIS en su Escuela de Verano - 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: La Organizaci\u00f3n Europea de Enfermedades Raras (EURORDIS) celebra por primera vez su Escuela de Verano en castellano. 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