{"id":4768,"date":"2019-10-30T06:44:41","date_gmt":"2019-10-30T06:44:41","guid":{"rendered":"https:\/\/sindromecharge.es\/index.php\/2019\/10\/30\/la-fefq-agradece-a-feder-su-compromiso-con-el-colectivo-de-pacientes-con-fibrosis-quistica\/"},"modified":"2019-10-30T06:44:41","modified_gmt":"2019-10-30T06:44:41","slug":"la-fefq-agradece-a-feder-su-compromiso-con-el-colectivo-de-pacientes-con-fibrosis-quistica","status":"publish","type":"post","link":"https:\/\/sindromecharge.es\/index.php\/2019\/10\/30\/la-fefq-agradece-a-feder-su-compromiso-con-el-colectivo-de-pacientes-con-fibrosis-quistica\/","title":{"rendered":"La FEFQ agradece a FEDER su compromiso con el colectivo de pacientes con Fibrosis Qu\u00edstica"},"content":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: <\/p>\n<p><p>El pasado 21 de octubre , D\u00f1a. Mar\u00eda Luisa Carcedo, Ministra de Sanidad, Consumo y Bienestar Social, confirm\u00f3 a representantes de la Federaci\u00f3n Espa\u00f1ola de Fibrosis Qu\u00edstica (FEFQ) que los pacientes podr\u00e1n acceder a dos f\u00e1rmacos para frenar esta enfermedad poco frecuente; casi cuatro a\u00f1os despu\u00e9s desde que Europa autorizara el primero de ellos.<\/p>\n<p>Tras una lucha de cuatro a\u00f1os por parte del movimiento asociativo de Fibrosis Qu\u00edstica, a partir del pr\u00f3ximo 1 de noviembre los pacientes podr\u00e1n tener acceso a los dos f\u00e1rmacos que proporcionar\u00e1 esperanza a las personas que conviven con esta enfermedad poco frecuente y a sus familiares.<\/p>\n<p>Durante estos a\u00f1os, desde FEDER hemos acompa\u00f1ado a la Federaci\u00f3n Espa\u00f1ola de Fibrosis Qu\u00edstica apoy\u00e1ndoles incondicionalmente, acompa\u00f1\u00e1ndoles y trabajando junto a la Federaci\u00f3n para trasladar su preocupaci\u00f3n ante la administraci\u00f3n, elevando su caso ante instituciones nacionales y auton\u00f3micas. Es por ello, que la Presidenta de la FEFQ nos muestra su agradecimiento por este tiempo de lucha a su lado.<\/p>\n<p>Este es un claro ejemplo del potencial del movimiento asociativo ya que, sin vosotros no se podr\u00eda conseguir todos los hitos que el colectivo de pacientes con ER ha conseguido durante estas dos d\u00e9cadas y tambi\u00e9n, queremos resaltar la importancia del apoyo mutuo ya que, solamente juntos podremos conseguir un futuro donde la esperanza sea la protagonista.<\/p>\n<p>\u00dalitima actualizaci\u00f3n 30\/10\/2019<\/p>\n<\/p>\n<p>Fuente: FEDER <a href=\"https:\/\/enfermedades-raras.org\/index.php\/actualidad\/noticias-eventos\/2-feder\/13159-la-fefq-agradece-a-feder-su-compromiso-con-el-colectivo-de-pacientes-con-fibrosis-qu%C3%ADstica\" target=\"_blank\" rel=\"noopener noreferrer\">La FEFQ agradece a FEDER su compromiso con el colectivo de pacientes con Fibrosis Qu\u00edstica<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: El pasado 21 de octubre , D\u00f1a. Mar\u00eda Luisa Carcedo, Ministra de Sanidad, Consumo y Bienestar Social, confirm\u00f3 a representantes de la Federaci\u00f3n Espa\u00f1ola de Fibrosis Qu\u00edstica (FEFQ) que los pacientes podr\u00e1n acceder a dos f\u00e1rmacos para frenar esta enfermedad poco frecuente; casi [&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-4768","post","type-post","status-publish","format-standard","hentry","category-noticias","tag-enfermedades-raras"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.6 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>La FEFQ agradece a FEDER su compromiso con el colectivo de pacientes con Fibrosis Qu\u00edstica - 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\/10\/30\/la-fefq-agradece-a-feder-su-compromiso-con-el-colectivo-de-pacientes-con-fibrosis-quistica\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"La FEFQ agradece a FEDER su compromiso con el colectivo de pacientes con Fibrosis Qu\u00edstica - 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: El pasado 21 de octubre , D\u00f1a. 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