{"id":3008,"date":"2017-06-29T09:17:29","date_gmt":"2017-06-29T09:17:29","guid":{"rendered":"https:\/\/sindromecharge.es\/index.php\/2017\/06\/29\/todo-lo-que-necesitas-saber-de-las-erns\/"},"modified":"2017-06-29T09:17:29","modified_gmt":"2017-06-29T09:17:29","slug":"todo-lo-que-necesitas-saber-de-las-erns","status":"publish","type":"post","link":"https:\/\/sindromecharge.es\/index.php\/2017\/06\/29\/todo-lo-que-necesitas-saber-de-las-erns\/","title":{"rendered":"Todo lo que necesitas saber de las ERNs"},"content":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: <\/p>\n<p><span style=\"font-size: 10pt;font-family: Arial, sans-serif\">Las <b>Redes Europeas de Referencia<\/b> (ERNs) son redes virtuales que re\u00fanen a proveedores de asistencia sanitaria de toda Europa para hacer frente a esas dolencias complejas o raras que requieren un tratamiento altamente especializado y una gran concentraci\u00f3n de conocimientos y de recursos.<\/span><\/p>\n<p style=\"margin: 0cm 0cm 0.0001pt\"><span style=\"font-size: 10pt;font-family: Arial, sans-serif\">Gracias a una plataforma virtual especializada y con elevadas medidas de seguridad, los especialistas pueden <b>compartir casos complejos con una gran comunidad m\u00e9dica europea<\/b>. Pueden <strong>solicitar consejo sobre un <b>diagn\u00f3stico<\/b> y consultar los resultados de ensayos cl\u00ednicos de una red de <\/strong>m\u00e1s de novecientos servicios sanitarios altamente especializados de veinticinco pa\u00edses<strong> de la Uni\u00f3n Europea y Noruega<\/strong>.<\/span><\/p>\n<p style=\"margin: 0cm 0cm 0.0001pt\">&nbsp;<\/p>\n<p style=\"margin: 0cm 0cm 0.0001pt\"><span style=\"font-size: 10pt;font-family: Arial, sans-serif\">El impacto de estas enfermedades para quienes las padecen, para sus familias y para quienes les cuidan es considerable, y es frecuente que haya pacientes sin diagnosticar, debido a la falta de conocimientos cient\u00edficos y m\u00e9dicos o a la dificultad para acceder a ellos.<\/span><\/p>\n<p style=\"margin: 0cm 0cm 0.0001pt\">&nbsp;<\/p>\n<p style=\"margin: 0cm 0cm 0.0001pt\"><strong><span style=\"font-size: 10pt;font-family: Arial, sans-serif\">Mercedes, la madre de <span style=\"text-decoration: underline\"><a href=\"http:\/\/www.enfermedades-raras.org\/index.php\/redes-europeas-de-referencia\/8633-conoce-a-la-historia-de-paula\" target=\"_blank\"><b>Paula<\/b><\/a><\/span><\/span><\/strong><span style=\"font-size: 10pt;font-family: Arial, sans-serif\">, una ni\u00f1a de 15 a\u00f1os que se ha sometido a tres trasplantes de h\u00edgado debido a una enfermedad, cuenta que la medicaci\u00f3n actual que toma su hija tiene muchos da\u00f1os colaterales y que si una red como esta \u00abinvestiga y desarrolla medicamentos que no sean tan agresivos, mejorar\u00e1 bastante la vida de ni\u00f1os y ni\u00f1as como Paula\u00bb.<\/span><\/p>\n<p style=\"margin: 0cm 0cm 0.0001pt\">&nbsp;<\/p>\n<h3 class=\"convenio-centro\" style=\"color: #fff;background: #791b7c;text-align: center;clear: both\">&nbsp;<\/h3>\n<h3 class=\"convenio-centro\" style=\"color: #fff;background: #791b7c;text-align: center;clear: both\">\u00bfSobre qu\u00e9 versan las redes?<\/h3>\n<p style=\"margin: 0cm 0cm 0.0001pt\">&nbsp;<\/p>\n<p style=\"margin: 0cm 0cm 0.0001pt\"><span style=\"font-size: 10pt;font-family: Arial, sans-serif\">Las redes abarcan <span style=\"text-decoration: underline\">24 especialidades<\/span>:<\/span><\/p>\n<li><b>ERN BOND<\/b>: huesos.<\/li>\n<li><b>ERN CRANIO<\/b>: craneoencef\u00e1licas y de otorrinolaringolog\u00eda &#8211; http:\/\/endo-ern.eu.<\/li>\n<li><b> Endo-ERN <\/b>: endocrinas.<\/li>\n<li><b> ERN EpiCARE <\/b>: epilepsia &#8211; https:\/\/www.epilepsyallianceeurope.org\/.<\/li>\n<li><b> ERKNet <\/b>: enfermedades renales.<\/li>\n<li><b> ERN-RND <\/b>: enfermedades neurol\u00f3gicas &#8211; http:\/\/www.ern-rnd.eu\/.<\/li>\n<li><b> ERNICA <\/b>: cong\u00e9nitas y hereditarias.<\/li>\n<li><b> ERN LUNG <\/b>: v\u00edas respiratorias &#8211; http:\/\/www.ern-lung.eu\/.<\/li>\n<li><b> ERN Skin <\/b>: de piel &#8211; http:\/\/www.genodermatoses-network.org.<\/li>\n<li><b> ERN EURACAN <\/b>: c\u00e1ncer de adultos (tumores s\u00f3lidos).<\/li>\n<li><b> ERN EuroBloodNet <\/b>: hematol\u00f3gicas.<\/li>\n<li><b> ERN eUROGEN <\/b>: urogenitales.<\/li>\n<li><b> ERN EURO-NMD <\/b>: neuromusculares &#8211; http:\/\/www.euro-nmd.eu\/.<\/li>\n<li><b> ERN EYE <\/b>: oculares &#8211; http:\/\/www.sensgene.com\/the-ern-eye-project.<\/li>\n<li><b> ERN GENTURIS <\/b>: s\u00edndromes gen\u00e9ticos con riesgo tumoral &#8211; http:\/\/www.genturis.eu\/.<\/li>\n<li><b> ERN GUARD-HEART <\/b>: de coraz\u00f3n.<\/li>\n<li><b> ERN ITHACA <\/b>: de coraz\u00f3n.<\/li>\n<li><b> ERN GUARD-HEART <\/b>: malformaciones cong\u00e9nitas y deficiencias intelectuales raras.<\/li>\n<li><b> MetabERN <\/b>: metab\u00f3licas hereditarias.<\/li>\n<li><b> ERN PaedCan <\/b>: c\u00e1nceres pedi\u00e1tricos (hematooncolog\u00eda).<\/li>\n<li><b> ERN RARE-LIVER <\/b>: hep\u00e1ticas.<\/li>\n<li><b> ERN ReCONNET <\/b>: Tejidos conjuntivos y enfermedades musculo-esquel\u00e9ticas.<\/li>\n<li><b> ERN RARE-LIVER <\/b>: hep\u00e1ticas.<\/li>\n<li><b> ERN RITA <\/b>: autoimmunitarias, autoinflamatorias e inmunodeficiencia.<\/li>\n<li><b> ERN TRANSPLANT-CHILD <\/b>: trasplantes infantiles (se coordina desde La Paz; os podemos poner en contacto con la responsable).<\/li>\n<li><b> VASCERN <\/b>: enfermedades vasculares multisist\u00e9micas raras &#8211; https:\/\/vascern.eu\/.<\/li>\n<p>Fuente: FEDER <a href=\"http:\/\/www.enfermedades-raras.org\/index.php\/actualidad\/noticias-eventos\/2-feder\/8634-todo-lo-que-necesitas-saber-de-las-erns\" target=\"_blank\">Todo lo que necesitas saber de las ERNs<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: Las Redes Europeas de Referencia (ERNs) son redes virtuales que re\u00fanen a proveedores de asistencia sanitaria de toda Europa para hacer frente a esas dolencias complejas o raras que requieren un tratamiento altamente especializado y una gran concentraci\u00f3n de conocimientos y de recursos. [&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-3008","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 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Todo lo que necesitas saber de las ERNs - 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\/06\/29\/todo-lo-que-necesitas-saber-de-las-erns\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Todo lo que necesitas saber de las ERNs - 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: Las Redes Europeas de Referencia (ERNs) son redes virtuales que re\u00fanen a proveedores de asistencia sanitaria de toda Europa para hacer frente a esas dolencias complejas o raras que requieren un tratamiento altamente especializado y una gran concentraci\u00f3n de conocimientos y de recursos. 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