{"id":4085,"date":"2018-11-12T10:22:43","date_gmt":"2018-11-12T10:22:43","guid":{"rendered":"https:\/\/sindromecharge.es\/index.php\/2018\/11\/12\/feder-y-fundacion-once-se-unen-para-elaborar-la-accion-estrategica-frente-a-las-enfermedades-raras\/"},"modified":"2018-11-12T10:22:43","modified_gmt":"2018-11-12T10:22:43","slug":"feder-y-fundacion-once-se-unen-para-elaborar-la-accion-estrategica-frente-a-las-enfermedades-raras","status":"publish","type":"post","link":"https:\/\/sindromecharge.es\/index.php\/2018\/11\/12\/feder-y-fundacion-once-se-unen-para-elaborar-la-accion-estrategica-frente-a-las-enfermedades-raras\/","title":{"rendered":"FEDER y Fundaci\u00f3n ONCE se unen para elaborar la acci\u00f3n estrat\u00e9gica frente a las enfermedades raras"},"content":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: <\/p>\n<p>&nbsp;<\/p>\n<p>Fundaci\u00f3n ONCE y la Federaci\u00f3n Espa\u00f1ola de Enfermedades Raras (FEDER) han firmado hoy un convenio que mantiene el compromiso de ambas entidades por mejorar la calidad de vida de las personas con discapacidad y de las personas con enfermedades poco frecuentes en la sociedad.<\/p>\n<p>El documento fue suscrito por Teresa Palah\u00ed, secretaria general de Fundaci\u00f3n ONCE, y Alba Ancochea, Directora de FEDER, y da continuidad al convenio marco de colaboraci\u00f3n que ambas entidades firmaron en enero de 2016. Con este Convenio Espec\u00edfico se formaliza la colaboraci\u00f3n de Fundaci\u00f3n ONCE en la acci\u00f3n estrat\u00e9gica que FEDER desarrollar\u00e1 en los pr\u00f3ximos tres a\u00f1os.<\/p>\n<p>En virtud de ese acuerdo, Fundaci\u00f3n ONCE participa en el desarrollo y evaluaci\u00f3n del Plan Estrat\u00e9gico de FEDER para los a\u00f1os 2019-2021, una hoja de ruta en la que ambas entidades trabajar\u00e1n juntas para defender los derechos de un colectivo que, en Espa\u00f1a, suma alrededor de 3 millones de personas.<\/p>\n<h3>M\u00e1s de una d\u00e9cada trabajando juntos<\/h3>\n<p>Si bien hoy se ha renovado el compromiso de ambas entidades por trabajar en red, esta sinergia se remonta a los inicios de la Federaci\u00f3n, hace ya casi veinte a\u00f1os. Se trata pues de una \u00abalianza hist\u00f3rica en la que Fundaci\u00f3n ONCE siempre nos ha acompa\u00f1ado\u00bb ha subrayado Ancochea.<\/p>\n<p>S\u00f3lo este a\u00f1o, su apoyo ha hecho posible \u00abnuestra acci\u00f3n en defensa de derechos, el impulso a nuestro Observatorio de Enfermedades Raras (OBSER), el desarrollo de iniciativas de sensibilizaci\u00f3n como nuestra Carrera por la Esperanza en Madrid, el impulso del proyecto solidario \u2018Gracias a ti\u2019 o visibilidad de las enfermedades poco frecuentes a trav\u00e9s de los cupones de ONCE\u00bb ha ejemplificado la Directora de FEDER.<\/p>\n<p>Por su parte, Teresa Palah\u00ed mostr\u00f3 su satisfacci\u00f3n por \u00abseguir avanzando\u00bb en la colaboraci\u00f3n con FEDER, \u00abaportando nuestro trabajo y conocimiento en la estrategia de esta organizaci\u00f3n\u00bb. \u00abConfiamos en que nuestro conocimiento ayude a afianzar el futuro\u00bb, concluy\u00f3.<\/p>\n<p style=\"text-align: right\">\u00daltima actualizaci\u00f3n: 12\/11\/2018.<\/p>\n<p>&nbsp;<\/p>\n<p>Fuente: FEDER <a href=\"https:\/\/enfermedades-raras.org\/index.php\/actualidad\/noticias-eventos\/2-feder\/11403-feder-y-fundaci%C3%B3n-once-se-unen-para-elaborar-la-acci%C3%B3n-estrat%C3%A9gica-frente-a-los-problemas-de-las-enfermedades-raras\" target=\"_blank\">FEDER y Fundaci\u00f3n ONCE se unen para elaborar la acci\u00f3n estrat\u00e9gica frente a las enfermedades raras<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: &nbsp; Fundaci\u00f3n ONCE y la Federaci\u00f3n Espa\u00f1ola de Enfermedades Raras (FEDER) han firmado hoy un convenio que mantiene el compromiso de ambas entidades por mejorar la calidad de vida de las personas con discapacidad y de las personas con enfermedades poco frecuentes en [&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-4085","post","type-post","status-publish","format-standard","hentry","category-noticias","tag-enfermedades-raras"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.4 - 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