{"id":1467,"date":"2015-11-12T08:29:17","date_gmt":"2015-11-12T08:29:17","guid":{"rendered":"http:\/\/sindromecharge.es\/index.php\/2015\/11\/12\/la-importancia-del-movimiento-asociativo-en-el-foro-innovaer\/"},"modified":"2015-11-12T08:29:17","modified_gmt":"2015-11-12T08:29:17","slug":"la-importancia-del-movimiento-asociativo-en-el-foro-innovaer","status":"publish","type":"post","link":"https:\/\/sindromecharge.es\/index.php\/2015\/11\/12\/la-importancia-del-movimiento-asociativo-en-el-foro-innovaer\/","title":{"rendered":"La importancia del movimiento asociativo en el Foro InnovaER"},"content":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: <\/p>\n<p>La Fundaci\u00f3n de Medicamentos Hu\u00e9rfanos y Enfermedades Raras de Sevilla (Mehuer) celebra hoy la segunda sesi\u00f3n de su II Foro InnovaER, enfocado directamente a la investigaci\u00f3n de estas patolog\u00edas. <\/p>\n<p>La cita, que se desarrolla en Pamplona, contar\u00e1 con la intervenci\u00f3n de Juan Carri\u00f3n, Presidente de la Federaci\u00f3n Espa\u00f1ola de Enfermedades Raras (FEDER), quien desarrollar\u00e1 la importancia y el valor de asociarse. \u201cLa fuerza y la voz del movimiento asociativo es un pilar fundamental para defender y garantizar los derechos de las personas y familias con enfermedades poco frecuentes en nuestro pa\u00eds\u201d, ha explicado.<\/p>\n<p>A lo largo de esta jornada los asistentes podr\u00e1n conocer la situaci\u00f3n que viven en Espa\u00f1a actualmente las personas con Enfermedades Raras (ER) as\u00ed como los desaf\u00edos a los que se enfrentan o la situaci\u00f3n de la investigaci\u00f3n de estas patolog\u00edas.<\/p>\n<p>Adem\u00e1s, se profundizar\u00e1 en algunas ER concretas como la Porfiria Aguda Intermitente, la enfermedad de Dravet, la Leucemia Lifocitica Cr\u00f3nica, P\u00e9nfigo o las Inmunodeficiencias cong\u00e9nitas de los adultos.<\/p>\n<p>Fuente: FEDER <a href=\"http:\/\/www.enfermedades-raras.org\/index.php\/actualidad\/noticias-eventos\/2-feder\/4974-la-importancia-del-movimiento-asociativo-en-el-foro-innovaer\" target=\"_blank\">La importancia del movimiento asociativo en el Foro InnovaER<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: La Fundaci\u00f3n de Medicamentos Hu\u00e9rfanos y Enfermedades Raras de Sevilla (Mehuer) celebra hoy la segunda sesi\u00f3n de su II Foro InnovaER, enfocado directamente a la investigaci\u00f3n de estas patolog\u00edas. La cita, que se desarrolla en Pamplona, contar\u00e1 con la intervenci\u00f3n de Juan Carri\u00f3n, [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":"","_members_access_role":[],"_members_access_error":""},"categories":[8],"tags":[36],"class_list":["post-1467","post","type-post","status-publish","format-standard","hentry","category-noticias","tag-enfermedades-raras"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.0 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>La importancia del movimiento asociativo en el Foro InnovaER - 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\/2015\/11\/12\/la-importancia-del-movimiento-asociativo-en-el-foro-innovaer\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"La importancia del movimiento asociativo en el Foro InnovaER - 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: La Fundaci\u00f3n de Medicamentos Hu\u00e9rfanos y Enfermedades Raras de Sevilla (Mehuer) celebra hoy la segunda sesi\u00f3n de su II Foro InnovaER, enfocado directamente a la investigaci\u00f3n de estas patolog\u00edas. 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