{"id":6660,"date":"2021-01-12T07:05:49","date_gmt":"2021-01-12T07:05:49","guid":{"rendered":"https:\/\/sindromecharge.es\/index.php\/2021\/01\/12\/el-ultimo-numero-de-newsrare-da-visibilidad-a-la-labor-de-feder\/"},"modified":"2021-01-12T07:05:49","modified_gmt":"2021-01-12T07:05:49","slug":"el-ultimo-numero-de-newsrare-da-visibilidad-a-la-labor-de-feder","status":"publish","type":"post","link":"https:\/\/sindromecharge.es\/index.php\/2021\/01\/12\/el-ultimo-numero-de-newsrare-da-visibilidad-a-la-labor-de-feder\/","title":{"rendered":"El \u00faltimo n\u00famero de newsRARE da visibilidad a la labor de FEDER"},"content":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: <\/p>\n<p>&nbsp;<\/p>\n<p>Una vez m\u00e1s, newsRARE se hace eco de la labor de nuestra Federaci\u00f3n y la de nuestro tejido asociativo, formado por m\u00e1s de 381 asociaciones de pacientes. En esta ocasi\u00f3n, en el mes de diciembre, este medio ha trasladado la labor que realizamos a nivel europeo a trav\u00e9s de la I Conferencia Foresight2030.<\/p>\n<p>A trav\u00e9s de esta I Conferencia pudimos plantear m\u00e1s de 30 propuestas al Ministerio de Sanidad para definir el futuro de las enfermedades raras. Esta conferencia, es parte del proyecto Rare2030 que busca sentar las bases de un marco normativo enfocado en la investigaci\u00f3n y las pol\u00edticas sociosanitarias de estas patolog\u00edas en Europa.<\/p>\n<p>Adem\u00e1s, newsRARE ha dado visibilidad al programa AcogER, una iniciativa de FEDER con el acogimiento de los ni\u00f1os que conviven con alguna enfermedad poco frecuente y se encuentran en el Servicio de Protecci\u00f3n a la Infancia (SPI). En esta ocasi\u00f3n, el medio tambi\u00e9n ha difundido el programa AcogER+, un proyecto dirigido a los m\u00e1s de 300.000 enfermeros espa\u00f1oles.<\/p>\n<p>Desde FEDER queremos dar las gracias una vez m\u00e1s a newsRARE por su labor y por la difusi\u00f3n de nuestras acci\u00f3n y las de nuestro movimiento asociativo. A trav\u00e9s de estas acciones conseguimos visibilizar la realidad de los m\u00e1s de tres millones de personas que conviven con alguna enfermedad poco frecuente en Espa\u00f1a.<\/p>\n<p>\u00daltima actualizaci\u00f3n 12\/01\/2021<\/p>\n<p>&nbsp;<\/p>\n<p>Fuente: FEDER <a href=\"https:\/\/enfermedades-raras.org\/index.php\/actualidad\/noticias-eventos\/2-feder\/14727-el-%C3%BAltimo-n%C3%BAmero-de-newsrare-da-visibilidad-a-la-labor-de-feder\" target=\"_blank\" rel=\"noopener\">El \u00faltimo n\u00famero de newsRARE da visibilidad a la labor de FEDER<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: &nbsp; Una vez m\u00e1s, newsRARE se hace eco de la labor de nuestra Federaci\u00f3n y la de nuestro tejido asociativo, formado por m\u00e1s de 381 asociaciones de pacientes. En esta ocasi\u00f3n, en el mes de diciembre, este medio ha trasladado la labor que [&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-6660","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>El \u00faltimo n\u00famero de newsRARE da visibilidad a la labor de FEDER - 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\/12\/el-ultimo-numero-de-newsrare-da-visibilidad-a-la-labor-de-feder\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"El \u00faltimo n\u00famero de newsRARE da visibilidad a la labor de FEDER - 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: &nbsp; Una vez m\u00e1s, newsRARE se hace eco de la labor de nuestra Federaci\u00f3n y la de nuestro tejido asociativo, formado por m\u00e1s de 381 asociaciones de pacientes. 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