{"id":3940,"date":"2018-08-28T06:36:11","date_gmt":"2018-08-28T06:36:11","guid":{"rendered":"https:\/\/sindromecharge.es\/index.php\/2018\/08\/28\/viajamos-a-bogota-para-definir-las-lineas-de-accion-frente-a-las-er-en-iberoamerica\/"},"modified":"2018-08-28T06:36:11","modified_gmt":"2018-08-28T06:36:11","slug":"viajamos-a-bogota-para-definir-las-lineas-de-accion-frente-a-las-er-en-iberoamerica","status":"publish","type":"post","link":"https:\/\/sindromecharge.es\/index.php\/2018\/08\/28\/viajamos-a-bogota-para-definir-las-lineas-de-accion-frente-a-las-er-en-iberoamerica\/","title":{"rendered":"Viajamos a Bogot\u00e1 para definir las l\u00edneas de acci\u00f3n frente a las ER en Iberoam\u00e9rica"},"content":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: <\/p>\n<p><p>Fuente: <span style=\"text-decoration: underline\"><a href=\"http:\/\/2018.aliber.org\/index-es.html#organiza\" target=\"_blank\">ALIBER<\/a><\/span> | Este a\u00f1o, el VI Encuentro Iberoamericano de Enfermedades Raras de ALIBER tendr\u00e1 lugar en Bogota, Colombia, del 20 al 22 de noviembre, organizado por 16 organizaciones colombianas de pacientes l\u00edderadas por ACOPEL, la Asociaci\u00f3n Colombiana de Pacientes con Enfermedades de Dep\u00f3sito Lisosomal. El evento tendr\u00e1 lugar en el Hotel Tequendama, bajo el lema \u00abDescubriendo capacidades en los pacientes\u00bb.<\/p>\n<p>El programa est\u00e1 configurado alrededor de tres ejes tem\u00e1ticos:<\/p>\n<p>\u00bb Discapacidad, en el que se abordar\u00e1n temas relativos a las capacidades de los pacientes, las familias y la aceptaci\u00f3n de las diferencias, el rol de paciente activo-experto, y se presentar\u00e1 el Proyecto ENSERio LATAM.<\/p>\n<p>\u00bbGubernamental, en el que se abordar\u00e1 el tema de los derechos de los pacientes, enfatizando en el derecho a la salud, se compartir\u00e1n experiencias iberoamericanas en relaci\u00f3n a Centros de Referencia y Registros de Enfermedades Hu\u00e9rfanas.<\/p>\n<p>\u00bb Cient\u00edfico, relativo a las contribuciones al \u00e1rea en el campo de la Gen\u00e9tica, tanto en relaci\u00f3n al diagn\u00f3stico como al tratamiento, y los avances de investigaci\u00f3n en el campo de las Enfermedades Raras.<\/p>\n<p>Adem\u00e1s, en este espacio tambi\u00e9n tendr\u00e1 lugar la Asamblea General de ALIBER.<\/p>\n<h3>\u00a1Inscr\u00edbete!<\/h3>\n<p><p>Si formas parte de una organizaci\u00f3n que represente a las Enfermedades Raras en un pa\u00eds Iberoamericano y deseas formar parte de esta Alianza, o bien participar en el Encuentro, <span style=\"text-decoration: underline\"><a href=\"https:\/\/www.acopel.org.co\/laweb\/contactenos\/formulario-inscripci%C3%B3n.html\" target=\"_blank\">s\u00f3lo debes rellenar el formulario de inscripci\u00f3n<\/a><\/span>. La fecha l\u00edmite de inscripci\u00f3n es el d\u00eda 30 de octubre.<\/p>\n<p>La inscripci\u00f3n al encuentro es gratu\u00edta, y existen tarifas especiales de alojamiento para las personas que asistan. Contacta con el hotel identific\u00e1ndote como participante del VI Encuentro Iberoamericano de Enfermedades Raras al hacer tu reserva.<\/p>\n<p style=\"text-align: right\"><span style=\"font-style: normal;font-weight: 400\">Fuente:&nbsp;<\/span><span style=\"font-weight: 400;font-style: normal\"><a href=\"http:\/\/2018.aliber.org\/index-es.html#organiza\" target=\"_blank\">ALIBER<\/a>.<\/span><\/p>\n<p style=\"text-align: right\">\u00daltima actualizaci\u00f3n: 28\/08\/2018.<\/p>\n<\/p>\n<p>Fuente: FEDER <a href=\"https:\/\/enfermedades-raras.org\/index.php\/actualidad\/noticias-eventos\/2-feder\/11040-viajamos-a-bogot%C3%A1-para-definir-las-l%C3%ADneas-de-acci%C3%B3n-frente-a-las-er-en-iberoam%C3%A9rica\" target=\"_blank\">Viajamos a Bogot\u00e1 para definir las l\u00edneas de acci\u00f3n frente a las ER en Iberoam\u00e9rica<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: Fuente: ALIBER | Este a\u00f1o, el VI Encuentro Iberoamericano de Enfermedades Raras de ALIBER tendr\u00e1 lugar en Bogota, Colombia, del 20 al 22 de noviembre, organizado por 16 organizaciones colombianas de pacientes l\u00edderadas por ACOPEL, la Asociaci\u00f3n Colombiana de Pacientes con Enfermedades de [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":"","_members_access_role":[],"_members_access_error":""},"categories":[8],"tags":[36],"class_list":["post-3940","post","type-post","status-publish","format-standard","hentry","category-noticias","tag-enfermedades-raras"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.2 - 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