{"id":2684,"date":"2017-03-16T10:26:45","date_gmt":"2017-03-16T10:26:45","guid":{"rendered":"http:\/\/sindromecharge.es\/index.php\/2017\/03\/16\/definimos-lineas-de-accion-europeas-en-materia-de-diagnostico\/"},"modified":"2017-03-16T10:26:45","modified_gmt":"2017-03-16T10:26:45","slug":"definimos-lineas-de-accion-europeas-en-materia-de-diagnostico","status":"publish","type":"post","link":"https:\/\/sindromecharge.es\/index.php\/2017\/03\/16\/definimos-lineas-de-accion-europeas-en-materia-de-diagnostico\/","title":{"rendered":"Definimos l\u00edneas de acci\u00f3n europeas en materia de diagn\u00f3stico"},"content":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: <\/p>\n<p><p>Los d\u00edas 17 y 18 de marzo participamos en el SWAN Europe Network Meeting, un encuentro internacional que organiza la Red de Apoyo para Personas Sin Diagn\u00f3stico (SWAN) en la sede barcelonesa de la Organizaci\u00f3n Europea de Enfermedades Raras (EURORDIS).<\/p>\n<p>SWAN Europe es una coalici\u00f3n de grupos, organizaciones y red de soporte que trabaja con familias y\/o pacientes afectados por s\u00edndromes sin un nombre y \/o condiciones gen\u00e9ticas no diagnosticadas.<\/p>\n<p>A trav\u00e9s de este encuentro, buscamos poner en com\u00fan nuestras prioridades en materia de acceso a diagn\u00f3stico, el primer problema al que hacen frente las personas con enfermedades poco frecuentes o sospecha de ello. El retraso diagn\u00f3stico alcanza a d\u00eda de hoy una media de cinco a\u00f1os, privando al paciente de la atenci\u00f3n y\/o tratamiento que podr\u00eda haber paliado el desarrollo de la enfermedad, que en un 30% de los casos conlleva un agravamiento de la misma.<\/p>\n<p>Recientemente, nos hemos alineado con el movimiento internacional de enfermedades poco frecuentes para implantar a nivel nacional sus <a href=\"http:\/\/www.enfermedades-raras.org\/images\/pdf\/RECOMENDACIONES-INTERNACIONALES.pdf\" target=\"_blank\">recomendaciones<\/a> en el abordaje de los casos sin diagn\u00f3stico, una iniciativa que nace de SWAN UK.<\/p>\n<p>No obstante, no es la primera vez que lo hacemos. Nuestra campa\u00f1a por el D\u00eda Mundial de las Enfermedades Raras de 2015, bajo el lema \u2018Hay un gesto que lo cambia todo\u2019, puso el foco en la importancia del diagn\u00f3stico precoz y en el acceso a tratamiento. Una movilizaci\u00f3n social que ha logrado hitos como el impulso del Plan Piloto para la agilizaci\u00f3n del diagn\u00f3stico en Enfermedades Raras, la ampliaci\u00f3n de las pruebas de cribado neonatal y la creaci\u00f3n del Real Decreto que crea y regula el Registro Estatal de Enfermedades Raras.<\/p>\n<p style=\"text-align: right\">\u00daltima actualizaci\u00f3n: 16\/03\/2017.<\/p>\n<\/p>\n<p>Fuente: FEDER <a href=\"http:\/\/www.enfermedades-raras.org\/index.php\/actualidad\/noticias-eventos\/2-feder\/7916-definimos-l%C3%ADneas-de-acci%C3%B3n-europeas-en-materia-de-diagn%C3%B3stico\" target=\"_blank\">Definimos l\u00edneas de acci\u00f3n europeas en materia de diagn\u00f3stico<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: Los d\u00edas 17 y 18 de marzo participamos en el SWAN Europe Network Meeting, un encuentro internacional que organiza la Red de Apoyo para Personas Sin Diagn\u00f3stico (SWAN) en la sede barcelonesa de la Organizaci\u00f3n Europea de Enfermedades Raras (EURORDIS). SWAN Europe es [&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-2684","post","type-post","status-publish","format-standard","hentry","category-noticias","tag-enfermedades-raras"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.4 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Definimos l\u00edneas de acci\u00f3n europeas en materia de diagn\u00f3stico - 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\/2017\/03\/16\/definimos-lineas-de-accion-europeas-en-materia-de-diagnostico\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Definimos l\u00edneas de acci\u00f3n europeas en materia de diagn\u00f3stico - 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: Los d\u00edas 17 y 18 de marzo participamos en el SWAN Europe Network Meeting, un encuentro internacional que organiza la Red de Apoyo para Personas Sin Diagn\u00f3stico (SWAN) en la sede barcelonesa de la Organizaci\u00f3n Europea de Enfermedades Raras (EURORDIS). 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