{"id":3309,"date":"2017-10-25T04:28:16","date_gmt":"2017-10-25T04:28:16","guid":{"rendered":"https:\/\/sindromecharge.es\/index.php\/2017\/10\/25\/viajamos-a-paris-para-reunirnos-en-el-c-nacional-de-alianzas\/"},"modified":"2017-10-25T04:28:16","modified_gmt":"2017-10-25T04:28:16","slug":"viajamos-a-paris-para-reunirnos-en-el-c-nacional-de-alianzas","status":"publish","type":"post","link":"https:\/\/sindromecharge.es\/index.php\/2017\/10\/25\/viajamos-a-paris-para-reunirnos-en-el-c-nacional-de-alianzas\/","title":{"rendered":"Viajamos a Par\u00eds para reunirnos en el C. Nacional de Alianzas"},"content":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: <\/p>\n<p><p>Entre los d\u00edas 25 y 26 de octubre nuestra Directora, Alba Ancochea, viaja hasta Par\u00eds para participar en el \u00faltimo encuentro del Consejo Nacional de Alianzas (CNA) de EURORDIS, la Organizaci\u00f3n Europea de Enfermedades Raras.<\/p>\n<p>El CNA es uno de los dos comit\u00e9s en los que FEDER interviene dentro de EURORDIS de forma directa. Este \u00f3rgano se configura como una piedra angular en el impulso de medidas pol\u00edticas para las enfermedades raras a nivel europeo.<\/p>\n<p>La cita, se produce adem\u00e1s pocos d\u00edas despu\u00e9s de que EURORDIS presentara en el Parlamento Europeo su propuesta de crear una red de trabajo que defienda las pol\u00edticas sociosanitarias de estas patolog\u00edas a nivel internacional para que puedan hacerse extensibles a nivel nacional en cada pa\u00eds miembro.<\/p>\n<p>Durante el evento de lanzamiento, que se pudo seguir en redes sociales con el hashtag #ParliamentAdvocate4Rare, los parlamentarios escucharon a los representantes de los pacientes sobre la realidad de vivir con una enfermedad rara. Su voz, fue representada por Grosset\u00eate, defensora parlamentaria de las enfermedades raras y mecenas del evento, y Martin Seychell, director general adjunto de la DG SANTE de la Comisi\u00f3n Europea.<\/p>\n<p style=\"text-align: right\">\u00daltima actualizaci\u00f3n: 25\/10\/2017.<\/p>\n<\/p>\n<p>Fuente: FEDER <a href=\"https:\/\/enfermedades-raras.org\/index.php\/actualidad\/noticias-eventos\/2-feder\/9348-viajamos-a-par%C3%ADs-para-reunirnos-en-el-c-nacional-de-alianzas\" target=\"_blank\">Viajamos a Par\u00eds para reunirnos en el C. Nacional de Alianzas<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: Entre los d\u00edas 25 y 26 de octubre nuestra Directora, Alba Ancochea, viaja hasta Par\u00eds para participar en el \u00faltimo encuentro del Consejo Nacional de Alianzas (CNA) de EURORDIS, la Organizaci\u00f3n Europea de Enfermedades Raras. El CNA es uno de los dos comit\u00e9s [&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-3309","post","type-post","status-publish","format-standard","hentry","category-noticias","tag-enfermedades-raras"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.9 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Viajamos a Par\u00eds para reunirnos en el C. 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