{"id":2470,"date":"2016-11-28T11:48:02","date_gmt":"2016-11-28T11:48:02","guid":{"rendered":"http:\/\/sindromecharge.es\/index.php\/2016\/11\/28\/presentamos-en-bogota-las-necesidades-de-las-er\/"},"modified":"2016-11-28T11:48:02","modified_gmt":"2016-11-28T11:48:02","slug":"presentamos-en-bogota-las-necesidades-de-las-er","status":"publish","type":"post","link":"https:\/\/sindromecharge.es\/index.php\/2016\/11\/28\/presentamos-en-bogota-las-necesidades-de-las-er\/","title":{"rendered":"Presentamos en Bogot\u00e1 las necesidades de las ER"},"content":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: <\/p>\n<p><p>Juan Carri\u00f3n, Presidente de la Federaci\u00f3n Espa\u00f1ola de Enfermedades Raras (FEDER) participa el 28 de noviembre en el Foro Internacional de Enfermedades Hu\u00e9rfanas que se celebra en Bogot\u00e1 (Colombia) para desarrollar la Estrategia Nacional de Enfermedades Raras que se est\u00e1 desarrollando en nuestro pa\u00eds.<\/p>\n<p>En este marco, Carri\u00f3n ha podido reunirse con los miembros del Observatorio de Enfermedades Hu\u00e9rfanas, de la Asociaci\u00f3n Colombiana de Pacientes con Enfermedades de Dep\u00f3sito Lisosomal (ACOPEL), Cronicare y la Alianza Iberoamericana de Enfermedades Raras (ALIBER) que tambi\u00e9n preside.<\/p>\n<p>En este marco, adem\u00e1s, el colectivo iberoamericano de enfermedades raras ha podido reunirse con el Ministerio de Salud y Protecci\u00f3n social para trasladar la realidad en la que se encuentran las familias con estas patolog\u00edas.<\/p>\n<p style=\"text-align: right\">\u00daltima actualizaci\u00f3n: 28\/11\/2016.<\/p>\n<\/p>\n<p>Fuente: FEDER <a href=\"http:\/\/www.enfermedades-raras.org\/index.php\/actualidad\/noticias-eventos\/2-feder\/7257-presentamos-en-bogot%C3%A1-las-necesidades-de-las-er\" target=\"_blank\">Presentamos en Bogot\u00e1 las necesidades de las ER<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: Juan Carri\u00f3n, Presidente de la Federaci\u00f3n Espa\u00f1ola de Enfermedades Raras (FEDER) participa el 28 de noviembre en el Foro Internacional de Enfermedades Hu\u00e9rfanas que se celebra en Bogot\u00e1 (Colombia) para desarrollar la Estrategia Nacional de Enfermedades Raras que se est\u00e1 desarrollando en nuestro [&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-2470","post","type-post","status-publish","format-standard","hentry","category-noticias","tag-enfermedades-raras"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.8 - 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