{"id":5547,"date":"2020-04-20T06:34:32","date_gmt":"2020-04-20T06:34:32","guid":{"rendered":"https:\/\/sindromecharge.es\/index.php\/2020\/04\/20\/unete-a-la-x-edicion-de-la-conferencia-europea-en-er-y-medicamentos-huerfanos\/"},"modified":"2020-04-20T06:34:32","modified_gmt":"2020-04-20T06:34:32","slug":"unete-a-la-x-edicion-de-la-conferencia-europea-en-er-y-medicamentos-huerfanos","status":"publish","type":"post","link":"https:\/\/sindromecharge.es\/index.php\/2020\/04\/20\/unete-a-la-x-edicion-de-la-conferencia-europea-en-er-y-medicamentos-huerfanos\/","title":{"rendered":"\u00danete a la X edici\u00f3n de la Conferencia Europea en ER y Medicamentos Hu\u00e9rfanos"},"content":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: <\/p>\n<p><p>En el contexto de la actual pandemia de COVID-19, la pr\u00f3xima Conferencia Europea sobre Enfermedades Raras y Productos Hu\u00e9rfanos (ECRD) tendr\u00e1 lugar EN L\u00cdNEA del 14 al 15 de mayo. Esta conferencia lleva como lema este a\u00f1o \u00abEl viaje del paciente con enfermedades raras en 2030\u00bb recordando que la pr\u00f3xima decada tiene un gran potencial para la mejora de la calidad de vida de las personas que conviven con alguna ER, elaborando una hoja de ruta.<\/p>\n<p>El ECRD es reconocido a nivel mundial como el evento de enfermedades raras m\u00e1s grande y dirigido por los pacientes en el que se lleva a cabo un di\u00e1logo, aprendizaje y conversaci\u00f3n en colaboraci\u00f3n, formando las bases para dar forma a las futuras pol\u00edticas de enfermedades raras. A trav\u00e9s de este evento, se consiguir\u00e1 concretar opciones pol\u00edticas que mejoren el bienestar de los pacientes de cara al 2030.<\/p>\n<p>Liderando, inspirando e involucrando a todos los interesados para que tomen medidas, la Conferencia es una oportunidad para establecer contactos e intercambiar conocimientos invaluables con todos los interesados \u200b\u200ben la comunidad de enfermedades raras: representantes de pacientes, formuladores de pol\u00edticas, investigadores, m\u00e9dicos, representantes de la industria, pagadores y reguladores.<\/p>\n<p>Los participantes podr\u00e1n atender a expertos mundiales sobre: \u200b\u200btendencias futuras en diagn\u00f3stico, derechos de acceso a atenci\u00f3n m\u00e9dica y medicamentos, prestaci\u00f3n de atenci\u00f3n, salud digital y el desarrollo, evaluaci\u00f3n y evaluaci\u00f3n de terapias. El di\u00e1logo colaborativo, el aprendizaje y las conversaciones que se llevar\u00e1n a cabo durante la ECRD formar\u00e1n parte de la base para dar forma a las pol\u00edticas nacionales e internacionales de enfermedades raras del futuro. Adem\u00e1s, ECRD 2020 pondr\u00e1 de relieve las tendencias emergentes en mejores pr\u00e1cticas, tecnolog\u00edas prometedoras y pensamiento innovador en los seis temas de la conferencia.<\/p>\n<p>Desde FEDER te adjuntamos m\u00e1s informaci\u00f3n sobre uno de los eventos principales en la agenda europea en la parte superior de la noticia.<\/p>\n<p>\u00daltima actualizaci\u00f3n 20\/04\/2020<\/p>\n<\/p>\n<p>Fuente: FEDER <a href=\"https:\/\/enfermedades-raras.org\/index.php\/actualidad\/noticias-eventos\/2-feder\/13819-%C3%BAnete-a-la-x-edici%C3%B3n-de-la-conferencia-europea-en-er-y-medicamentos-hu%C3%A9rfanos\" target=\"_blank\" rel=\"noopener noreferrer\">\u00danete a la X edici\u00f3n de la Conferencia Europea en ER y Medicamentos Hu\u00e9rfanos<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: En el contexto de la actual pandemia de COVID-19, la pr\u00f3xima Conferencia Europea sobre Enfermedades Raras y Productos Hu\u00e9rfanos (ECRD) tendr\u00e1 lugar EN L\u00cdNEA del 14 al 15 de mayo. Esta conferencia lleva como lema este a\u00f1o \u00abEl viaje del paciente con enfermedades [&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-5547","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>\u00danete a la X edici\u00f3n de la Conferencia Europea en ER y Medicamentos Hu\u00e9rfanos - 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\/2020\/04\/20\/unete-a-la-x-edicion-de-la-conferencia-europea-en-er-y-medicamentos-huerfanos\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"\u00danete a la X edici\u00f3n de la Conferencia Europea en ER y Medicamentos Hu\u00e9rfanos - 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: En el contexto de la actual pandemia de COVID-19, la pr\u00f3xima Conferencia Europea sobre Enfermedades Raras y Productos Hu\u00e9rfanos (ECRD) tendr\u00e1 lugar EN L\u00cdNEA del 14 al 15 de mayo. 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