{"id":3819,"date":"2018-06-11T05:46:10","date_gmt":"2018-06-11T05:46:10","guid":{"rendered":"https:\/\/sindromecharge.es\/index.php\/2018\/06\/11\/eres-una-entidad-miembro-participa\/"},"modified":"2018-06-11T05:46:10","modified_gmt":"2018-06-11T05:46:10","slug":"eres-una-entidad-miembro-participa","status":"publish","type":"post","link":"https:\/\/sindromecharge.es\/index.php\/2018\/06\/11\/eres-una-entidad-miembro-participa\/","title":{"rendered":"\u00bfEres una entidad miembro? \u00a1Participa!"},"content":{"rendered":"

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

 <\/p>\n

El 16 de junio celebramos nuestra Asamblea General de Socios, donde la fuerza de un tejido asociativo conformado por 339 entidades marcar\u00e1 nuestra hoja de ruta  este a\u00f1o y en el futuro a largo plazo de nuestra Federaci\u00f3n.<\/p>\n

Esta Asamblea es nuestro m\u00e1ximo \u00f3rgano de gobierno , destacando dentro de los diferentes mecanismos de participaci\u00f3n asociativa: asambleas auton\u00f3micas, workshops y grupos de trabajo. A trav\u00e9s de ella, la participaci\u00f3n de las asociaciones de pacientes ratifica e interviene sobre los principales objetivos de nuestra federaci\u00f3n.<\/p>\n

Porque el papel de las asociaciones ha sido y es determinante en la pol\u00edtica sociosanitaria de ER. Juntos, estamos avanzando en aspectos tan fundamentales como la defensa de nuestros derechos, premisas que poco a poco van haci\u00e9ndose hueco en la administraci\u00f3n auton\u00f3mica y nacional. Para continuar trabajando en esta l\u00ednea, hemos celebrado ya nuestras asambleas auton\u00f3micas que culminan este s\u00e1bado con la general.<\/span><\/p>\n

Este encuentro, el m\u00e1s importante del a\u00f1o para el futuro de la organizaci\u00f3n, ha sido posible gracias a Ministerio de Sanidad, Servicios Sociales e Igualdad, la Comunidad de Madrid, El Ayuntamiento de Madrid, la Junta de Extremadura, la Regi\u00f3n de Murcia, Boehringer Ingelheim, Fundaci\u00f3n Montemadrid, Amicus, Orphan Europe, Fundaci\u00f3n Jes\u00fas Serra, ARC Racing, Alfa Acacias, NH Hotel Group, Aquadeus y CILSEM.<\/p>\n

Si eres una entidad miembro, inf\u00f3rmate en participacion@enfermedades-raras.org.<\/p>\n

\u00daltima actualizaci\u00f3n: 11\/06\/2018.<\/p>\n

 <\/p>\n

Fuente: FEDER \u00bfEres una entidad miembro? \u00a1Participa!<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"

Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra:   El 16 de junio celebramos nuestra Asamblea General de Socios, donde la fuerza de un tejido asociativo conformado por 339 entidades marcar\u00e1 nuestra hoja de ruta  este a\u00f1o y en el futuro a largo plazo de nuestra Federaci\u00f3n. Esta Asamblea es nuestro […]<\/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-3819","post","type-post","status-publish","format-standard","hentry","category-noticias","tag-enfermedades-raras"],"yoast_head":"\n\u00bfEres una entidad miembro? \u00a1Participa! - 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\/2018\/06\/11\/eres-una-entidad-miembro-participa\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"\u00bfEres una entidad miembro? \u00a1Participa! - 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 16 de junio celebramos nuestra Asamblea General de Socios, donde la fuerza de un tejido asociativo conformado por 339 entidades marcar\u00e1 nuestra hoja de ruta  este a\u00f1o y en el futuro a largo plazo de nuestra Federaci\u00f3n. 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