{"id":4405,"date":"2019-05-17T07:57:25","date_gmt":"2019-05-17T07:57:25","guid":{"rendered":"https:\/\/sindromecharge.es\/index.php\/2019\/05\/17\/nuestra-directora-alba-ancochea-representa-a-la-familia-feder-en-el-encuentro-anual-de-euroris\/"},"modified":"2019-05-17T07:57:25","modified_gmt":"2019-05-17T07:57:25","slug":"nuestra-directora-alba-ancochea-representa-a-la-familia-feder-en-el-encuentro-anual-de-euroris","status":"publish","type":"post","link":"https:\/\/sindromecharge.es\/index.php\/2019\/05\/17\/nuestra-directora-alba-ancochea-representa-a-la-familia-feder-en-el-encuentro-anual-de-euroris\/","title":{"rendered":"Nuestra directora, Alba Ancochea, representa a la familia FEDER en el Encuentro Anual de EURORIS"},"content":{"rendered":"

Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: <\/p>\n

Este fin de semana, la familia FEDER estar\u00e1 representada por nuestra Directora, Alba Ancochea, en el Encuentro Anual que la Alianza Europea de Enfermedades Raras (EURORDIS) celebra en Bucarest, Ruman\u00eda.<\/p>\n

Ancochea, adem\u00e1s de participar como miembro del Comit\u00e9 Organizador del Programa del encuentro, participar\u00e1 en la mesa redonda sobre c\u00f3mo hacer un mejor uso de los posicionamientos del colectivo para lograr un mayor impacto y una mayor implicaci\u00f3n social.<\/p>\n

Y es que esta edici\u00f3n est\u00e1 especialmente enfocada a la acci\u00f3n de incidencia pol\u00edtica del colectivo. Para ello, adem\u00e1s, se llevar\u00e1n a cabo 8 workshops que abordar\u00e1n el papel de los pacientes en las Redes Europeas de Referencia, protecci\u00f3n de datos, desarrollo de posicionamientos y la consolidaci\u00f3n de una red de pacientes que defienda los derechos del colectivo.<\/p>\n

\u00a1Pronto m\u00e1s informaci\u00f3n!<\/p>\n

\u00daltima actualizaci\u00f3n: 17\/05\/2019.<\/p>\n<\/p>\n

Fuente: FEDER Nuestra directora, Alba Ancochea, representa a la familia FEDER en el Encuentro Anual de EURORIS<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"

Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: Este fin de semana, la familia FEDER estar\u00e1 representada por nuestra Directora, Alba Ancochea, en el Encuentro Anual que la Alianza Europea de Enfermedades Raras (EURORDIS) celebra en Bucarest, Ruman\u00eda. Ancochea, adem\u00e1s de participar como miembro del Comit\u00e9 Organizador del Programa del encuentro, […]<\/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-4405","post","type-post","status-publish","format-standard","hentry","category-noticias","tag-enfermedades-raras"],"yoast_head":"\nNuestra directora, Alba Ancochea, representa a la familia FEDER en el Encuentro Anual de EURORIS - 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\/2019\/05\/17\/nuestra-directora-alba-ancochea-representa-a-la-familia-feder-en-el-encuentro-anual-de-euroris\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Nuestra directora, Alba Ancochea, representa a la familia FEDER en el Encuentro Anual de EURORIS - 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 fin de semana, la familia FEDER estar\u00e1 representada por nuestra Directora, Alba Ancochea, en el Encuentro Anual que la Alianza Europea de Enfermedades Raras (EURORDIS) celebra en Bucarest, Ruman\u00eda. 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