{"id":6691,"date":"2021-01-21T07:59:40","date_gmt":"2021-01-21T07:59:40","guid":{"rendered":"https:\/\/sindromecharge.es\/index.php\/2021\/01\/21\/inscribete-en-la-ultima-conferencia-sobre-el-proyecto-rare2030\/"},"modified":"2021-01-21T07:59:40","modified_gmt":"2021-01-21T07:59:40","slug":"inscribete-en-la-ultima-conferencia-sobre-el-proyecto-rare2030","status":"publish","type":"post","link":"https:\/\/sindromecharge.es\/index.php\/2021\/01\/21\/inscribete-en-la-ultima-conferencia-sobre-el-proyecto-rare2030\/","title":{"rendered":"Inscr\u00edbete en la \u00faltima conferencia sobre el proyecto Rare2030"},"content":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: <\/p>\n<p><p>Este evento ser\u00e1 la culminaci\u00f3n de nuestro estudio de dos a\u00f1os y se presentar\u00e1 nuestras recomendaciones el 23 de febrero.<\/p>\n<p>El evento final de Rare 2030 marca el final de este estudio de prospectiva de dos a\u00f1os y ser\u00e1 la ocasi\u00f3n para presentar las recomendaciones de pol\u00edticas de Rare 2030 para un nuevo marco de pol\u00edticas en presencia de oradores de alto nivel, como la miembro del Parlamento Fr\u00e9d\u00e9rique Ries, o La comisionada de Salud y Seguridad Alimentaria, Stella Kyriakides, por nombrar solo algunas.<\/p>\n<p>Despu\u00e9s de la presentaci\u00f3n y un panel de discusi\u00f3n sobre los resultados del proyecto, las sesiones tem\u00e1ticas espec\u00edficas (acceso a la atenci\u00f3n m\u00e9dica, datos, diagn\u00f3sticos, &#8230;) ser\u00e1n la oportunidad para que la audiencia conozca m\u00e1s sobre las recomendaciones de Rare 2030 en detalle y aprenda c\u00f3mo util\u00edcelos en su labor de promoci\u00f3n, investigaci\u00f3n y desarrollo, salud y pol\u00edticas.<\/p>\n<p>\u00bfQu\u00e9 es Rare2030 ?<\/p>\n<p>Rare 2030 es un estudio prospectivo que re\u00fane las aportaciones de un gran grupo de pacientes, m\u00e9dicos y l\u00edderes de opini\u00f3n clave para proponer recomendaciones pol\u00edticas que nos llevar\u00e1n a una pol\u00edtica mejorada y un futuro mejor para las personas que viven con una enfermedad rara en Europa.<\/p>\n<p>\u00daltima actualizaci\u00f3n 21\/01\/2021<\/p>\n<\/p>\n<p>Fuente: FEDER <a href=\"https:\/\/enfermedades-raras.org\/index.php\/actualidad\/noticias-eventos\/2-feder\/14750-inscr%C3%ADbete-en-la-%C3%BAltima-conferencia-sobre-el-proyecto-rare2030\" target=\"_blank\" rel=\"noopener\">Inscr\u00edbete en la \u00faltima conferencia sobre el proyecto Rare2030<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: Este evento ser\u00e1 la culminaci\u00f3n de nuestro estudio de dos a\u00f1os y se presentar\u00e1 nuestras recomendaciones el 23 de febrero. El evento final de Rare 2030 marca el final de este estudio de prospectiva de dos a\u00f1os y ser\u00e1 la ocasi\u00f3n para presentar [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[8],"tags":[36],"class_list":["post-6691","post","type-post","status-publish","format-standard","hentry","category-noticias","tag-enfermedades-raras"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.7 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Inscr\u00edbete en la \u00faltima conferencia sobre el proyecto Rare2030 - 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\/2021\/01\/21\/inscribete-en-la-ultima-conferencia-sobre-el-proyecto-rare2030\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Inscr\u00edbete en la \u00faltima conferencia sobre el proyecto Rare2030 - 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: Este evento ser\u00e1 la culminaci\u00f3n de nuestro estudio de dos a\u00f1os y se presentar\u00e1 nuestras recomendaciones el 23 de febrero. 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