{"id":56,"date":"2022-01-25T17:20:12","date_gmt":"2022-01-25T16:20:12","guid":{"rendered":"https:\/\/ern-ithaca.eu\/?page_id=56"},"modified":"2024-10-29T15:29:08","modified_gmt":"2024-10-29T14:29:08","slug":"european-reference-networks","status":"publish","type":"page","link":"https:\/\/ern-ithaca.eu\/es\/about-us\/european-reference-networks\/","title":{"rendered":"\u00bfQu\u00e9 son los ERN?"},"content":{"rendered":"<h2 class=\"wp-block-heading\" id=\"what-is-an-ern\">\u00bfQu\u00e9 es una ERN?<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">Las Redes Europeas de Referencia (ERN) son redes de profesionales sanitarios europeos especializados en un conjunto concreto de enfermedades raras, creadas con el fin de poner en com\u00fan la experiencia cl\u00ednica disponible en toda Europa y concentrar los conocimientos y los recursos en enfermedades raras y\/o complejas.<\/p>\n\n\n\n<div style=\"height:19px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<h3 class=\"wp-block-heading\">La necesidad de las ERN<\/h3>\n\n\n\n<p class=\"wp-block-paragraph\">Ning\u00fan pa\u00eds por s\u00ed solo cuenta con los conocimientos y la capacidad necesarios para tratar todas las enfermedades raras y complejas. Las RER ofrecen a los pacientes y m\u00e9dicos de toda Europa acceso a los mejores conocimientos especializados y un intercambio oportuno de informaci\u00f3n que puede salvar vidas, sin necesidad de desplazarse a otro pa\u00eds.<\/p>\n\n\n\n<div class=\"wp-block-columns is-layout-flex wp-container-core-columns-is-layout-8f761849 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:66.66%\">\n<p class=\"wp-block-paragraph\">En un pa\u00eds determinado, las personas que padecen una enfermedad rara y\/o compleja pueden <strong>tener dificultades para obtener un diagn\u00f3stico o un tratamiento<\/strong>. Al igual que ocurre con las enfermedades, la experiencia cl\u00ednica en un pa\u00eds determinado tambi\u00e9n puede ser relativamente escasa. Esto puede traducirse en una falta de concienciaci\u00f3n y de conocimiento por parte de los m\u00e9dicos sobre las opciones terap\u00e9uticas, en una informaci\u00f3n limitada tanto para los pacientes como para los profesionales sanitarios y\/o en una falta de competencia profesional a la hora de diagnosticar y tratar estas enfermedades raras o complejas.<\/p>\n<\/div>\n\n\n\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:33.33%\">\n<figure class=\"wp-block-image size-full\"><img loading=\"lazy\" decoding=\"async\" width=\"502\" height=\"196\" src=\"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2024\/10\/Capture-decran-2024-10-29-144932.png\" alt=\"\" class=\"wp-image-6268\"\/><\/figure>\n<\/div>\n<\/div>\n\n\n\n<div style=\"height:19px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<h3 class=\"wp-block-heading\">Fundaci\u00f3n ERN<\/h3>\n\n\n\n<div class=\"wp-block-columns is-layout-flex wp-container-core-columns-is-layout-8f761849 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\">\n<div class=\"wp-block-columns is-layout-flex wp-container-core-columns-is-layout-8f761849 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:33.33%\">\n<figure class=\"wp-block-image size-full\"><img loading=\"lazy\" decoding=\"async\" width=\"323\" height=\"156\" src=\"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2022\/03\/telecharger-1.png\" alt=\"\" class=\"wp-image-1835\"\/><\/figure>\n<\/div>\n\n\n\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:66.66%\">\n<div style=\"height:33px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<p class=\"wp-block-paragraph\">Las Redes Europeas de Referencia (ERN) para enfermedades raras y afecciones complejas se crearon en 2017 a ra\u00edz de la <a href=\"https:\/\/eur-lex.europa.eu\/LexUriServ\/LexUriServ.do?uri=OJ:L:2011:088:0045:0065:fr:PDF\" target=\"_blank\" rel=\"noreferrer noopener\">Directiva europea sobre la aplicaci\u00f3n de los derechos de los pacientes en la asistencia sanitaria transfronteriza<\/a>.<strong> <\/strong><\/p>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Su creaci\u00f3n ha sido considerada por las partes interesadas del \u00e1mbito mundial y europeo en el \u00e1mbito de las enfermedades raras como una iniciativa sin precedentes <\/strong>en la mejora de la gesti\u00f3n sanitaria de los pacientes que padecen enfermedades raras.<\/p>\n\n\n\n<div class=\"wp-block-columns is-layout-flex wp-container-core-columns-is-layout-8f761849 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:66.66%\">\n<div style=\"height:40px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<p class=\"wp-block-paragraph\">En la Uni\u00f3n Europea, una enfermedad se considera rara cuando afecta a menos de 5 de cada 10 000 personas en el conjunto de los Estados miembros. El objetivo de las RER es <strong>recopilar y compartir conocimientos sobre las enfermedades raras, que, por definici\u00f3n, son escasos y fragmentados debido a la baja prevalencia de estas afecciones<\/strong>. Se espera que el conjunto de conocimientos especializados resultante contribuya a desarrollar buenas pr\u00e1cticas en la coordinaci\u00f3n de las v\u00edas de atenci\u00f3n al paciente, reduciendo as\u00ed los resultados negativos para los pacientes que padecen enfermedades raras \u2014como el \u00abdeambular diagn\u00f3stico\u00bb\u2014, al tiempo que se mejora la calidad general de la atenci\u00f3n y se reduce el coste acumulado para la sociedad.&nbsp;&nbsp;<\/p>\n<\/div>\n\n\n\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:33.33%\">\n<figure class=\"wp-block-image size-full\"><img loading=\"lazy\" decoding=\"async\" width=\"436\" height=\"483\" src=\"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2024\/10\/Capture-decran-2024-10-29-150428.png\" alt=\"\" class=\"wp-image-6269\"\/><\/figure>\n<\/div>\n<\/div>\n\n\n\n<div style=\"height:19px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<h3 class=\"wp-block-heading\">\u00bfQu\u00e9 se espera de las ERN?<\/h3>\n\n\n\n<p class=\"wp-block-paragraph\">Se espera que los ERN:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Facilitar a los profesionales sanitarios el acceso a un conjunto m\u00e1s amplio de conocimientos y experiencia especializados;<\/li>\n<\/ul>\n\n\n\n<p class=\"wp-block-paragraph\"><\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Reunir un conjunto de recursos especializados para pacientes y profesionales sanitarios;<\/li>\n<\/ul>\n\n\n\n<p class=\"wp-block-paragraph\"><\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Ayuda a mejorar el conocimiento sobre las enfermedades raras aportando datos de pacientes para su uso en estudios de investigaci\u00f3n<\/li>\n<\/ul>\n\n\n\n<div style=\"height:42px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<h2 class=\"wp-block-heading\" id=\"list-of-erns\">Lista de todos los ERN<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">En la actualidad hay 24 ERN, cada una de las cuales se centra en un \u00e1mbito m\u00e9dico espec\u00edfico relacionado con enfermedades raras o afecciones complejas:<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><a href=\"http:\/\/endo-ern.eu\/ern\/\">Endo-ERN<\/a>: Red Europea de Referencia sobre enfermedades endocrinas.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><a href=\"http:\/\/www.erknet.org\/\">ERKNet<\/a>: Red Europea de Referencia sobre enfermedades renales.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><a href=\"https:\/\/ernbond.eu\/\">ERN BOND<\/a>: Red Europea de Referencia sobre trastornos \u00f3seos.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><a href=\"https:\/\/ern-cranio.eu\/\">ERN CRANIO<\/a>: Red Europea de Referencia sobre anomal\u00edas craneofaciales y trastornos otorrinolaringol\u00f3gicos.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><a href=\"https:\/\/epi-care.eu\/\">ERN EpiCARE<\/a>: Red Europea de Referencia sobre epilepsias.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><a href=\"https:\/\/euracan.ern-net.eu\/\">ERN EURACAN<\/a>: Red Europea de Referencia sobre c\u00e1nceres en adultos (tumores s\u00f3lidos).<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><a href=\"http:\/\/www.eurobloodnet.eu\/\">ERN EuroBloodNet<\/a>: Red Europea de Referencia sobre enfermedades hematol\u00f3gicas.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><a href=\"http:\/\/eurogen-ern.eu\/\">ERN eUROGEN<\/a>: Red Europea de Referencia sobre enfermedades y afecciones urogenitales.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><a href=\"http:\/\/www.ern-euro-nmd.eu\/\">ERN EURO-NMD<\/a>: Red Europea de Referencia sobre enfermedades neuromusculares.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><a href=\"http:\/\/www.ern-eye.eu\/\">ERN EYE<\/a>: Red Europea de Referencia sobre enfermedades oculares.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><a href=\"http:\/\/www.genturis.eu\/English\/Home.html\">ERN GENTURIS<\/a>: Red Europea de Referencia sobre s\u00edndromes de riesgo tumoral gen\u00e9tico.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><a href=\"https:\/\/guardheart.ern-net.eu\/\">ERN GUARD-HEART<\/a>: Red Europea de Referencia sobre enfermedades card\u00edacas.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><a href=\"https:\/\/ern-ernica.eu\/\">ERNICA<\/a>: Red Europea de Referencia sobre anomal\u00edas hereditarias y cong\u00e9nitas.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><a href=\"http:\/\/www.ernithaca.org\/\"><strong>ERN ITHACA<\/strong><\/a><strong>: Red Europea de Referencia sobre malformaciones cong\u00e9nitas y discapacidad intelectual poco frecuente.<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><a href=\"http:\/\/www.ern-lung.eu\/\">ERN LUNG<\/a>: Red Europea de Referencia sobre enfermedades respiratorias.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><a href=\"https:\/\/paedcan.ern-net.eu\/\">ERN PaedCan<\/a>: Red Europea de Referencia sobre c\u00e1ncer infantil (hemato-oncolog\u00eda).<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><a href=\"http:\/\/www.rare-liver.eu\/\">ERN RARE-LIVER<\/a>: Red Europea de Referencia sobre enfermedades hepatol\u00f3gicas.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><a href=\"https:\/\/reconnet.ern-net.eu\/\">ERN ReCONNET<\/a>: Red Europea de Referencia sobre enfermedades del tejido conectivo y del aparato locomotor.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><a href=\"http:\/\/rita.ern-net.eu\/\">ERN RITA<\/a>: Red Europea de Referencia sobre enfermedades de inmunodeficiencia, autoinflamatorias y autoinmunes.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><a href=\"http:\/\/www.ern-rnd.eu\/\">ERN-RND<\/a>: Red Europea de Referencia sobre enfermedades neurol\u00f3gicas.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><a href=\"http:\/\/skin.ern-net.eu\/\">ERN Skin<\/a>: Red Europea de Referencia sobre enfermedades de la piel.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><a href=\"http:\/\/www.transplantchild.com\/\">ERN TRASPLANTE-NI\u00d1O<\/a>: Red Europea de Referencia en Trasplantes Pedi\u00e1tricos.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><a href=\"http:\/\/metab.ern-net.eu\/\">MetabERN<\/a>: Red Europea de Referencia sobre trastornos metab\u00f3licos hereditarios.<a href=\"http:\/\/www.vascern.eu\/\">VASCERN<\/a>: Red Europea de Referencia sobre enfermedades vasculares multisist\u00e9micas.<\/p>\n\n\n\n<div style=\"height:42px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<h2 class=\"wp-block-heading\">El ecosistema de la ERN<\/h2>\n\n\n\n<div class=\"wp-block-columns is-layout-flex wp-container-core-columns-is-layout-8f761849 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-vertically-aligned-top is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:15%\">\n<figure class=\"wp-block-image size-full\"><img loading=\"lazy\" decoding=\"async\" width=\"1200\" height=\"832\" src=\"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2024\/01\/European_Commission.svg_.png\" alt=\"\" class=\"wp-image-4184\" srcset=\"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2024\/01\/European_Commission.svg_.png 1200w, https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2024\/01\/European_Commission.svg_-600x416.png 600w, https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2024\/01\/European_Commission.svg_-768x532.png 768w\" sizes=\"auto, (max-width: 1200px) 100vw, 1200px\" \/><\/figure>\n<\/div>\n\n\n\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:85%\">\n<p class=\"wp-block-paragraph\"><strong>La Acci\u00f3n Conjunta sobre la integraci\u00f3n de las RER en los sistemas sanitarios nacionales <\/strong>(Proyecto JARDIN) se ha desarrollado en el marco del programa EU4Health (EU4H). JARDIN se basa en un consorcio de 29 Estados socios: 27 Estados miembros de la UE (EM) + Noruega + Ucrania. Re\u00fane a 55 partes interesadas (todos los ministerios de Sanidad, numerosos centros de salud, infraestructuras de investigaci\u00f3n, etc.). Muchos centros de salud vinculados al 7.\u00ba Programa Marco son participantes oficiales. El acuerdo de subvenci\u00f3n se ha firmado por un periodo de tres a\u00f1os, con un presupuesto de la UE de 11 millones de euros. <\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Para obtener m\u00e1s informaci\u00f3n sobre el proyecto: <a href=\"https:\/\/ern-ithaca.eu\/es\/jardin-project-the-joint-action-on-integration-of-erns-into-national-healthcare-systems\/\">Proyecto JARDIN: Acci\u00f3n conjunta para la integraci\u00f3n de las Redes Europeas de Referencia (ERN) en los sistemas sanitarios nacionales \u2013 ERN ITHACA (ern-ithaca.eu)<\/a><\/p>\n<\/div>\n<\/div>\n\n\n\n<div class=\"wp-block-columns is-layout-flex wp-container-core-columns-is-layout-8f761849 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-vertically-aligned-top is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:15%\">\n<figure class=\"wp-block-image size-full\"><img loading=\"lazy\" decoding=\"async\" width=\"768\" height=\"170\" src=\"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2022\/02\/European-Joint-Program-Rare-Diseases.png\" alt=\"\" class=\"wp-image-274\" srcset=\"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2022\/02\/European-Joint-Program-Rare-Diseases.png 768w, https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2022\/02\/European-Joint-Program-Rare-Diseases-600x133.png 600w\" sizes=\"auto, (max-width: 768px) 100vw, 768px\" \/><\/figure>\n<\/div>\n\n\n\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:85%\">\n<p class=\"wp-block-paragraph\"><a href=\"https:\/\/www.ejprarediseases.org\/\"><strong>El Proyecto Conjunto Europeo sobre Enfermedades Raras<\/strong><\/a> (EJP-RD), una iniciativa a escala de la UE, centrada en los pacientes y cofinanciada por la UE y los Estados miembros, que fomenta la creaci\u00f3n de un ecosistema de investigaci\u00f3n sobre las enfermedades raras, f\u00e1cil de utilizar para los cient\u00edficos y que aporte beneficios a los pacientes de la forma m\u00e1s eficiente. Entre los objetivos de la EJP-RD se incluye la organizaci\u00f3n de acciones con las Redes Europeas de Referencia (ERN). La EJP-RD se lleva a cabo mediante financiaci\u00f3n espec\u00edfica, oportunidades de formaci\u00f3n y servicios orientados a toda la comunidad de las enfermedades raras. M\u00e1s informaci\u00f3n <a href=\"https:\/\/clicktime.symantec.com\/3QHK4nWMvSf3U4i8d8Pf9Ls6H2?u=www.ejprarediseases.org\">aqu\u00ed<\/a>.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Para ponerte en contacto con el servicio de asistencia t\u00e9cnica de EJP RD, sigue este enlace&nbsp;<a href=\"https:\/\/www.ejprarediseases.org\/index.php\/ejp-rd-helpdesk\/\">aqu\u00ed<\/a>.<\/p>\n<\/div>\n<\/div>\n\n\n\n<div class=\"wp-block-columns are-vertically-aligned-top is-layout-flex wp-container-core-columns-is-layout-8f761849 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-vertically-aligned-top is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:15%\"><\/div>\n\n\n\n<div class=\"wp-block-column is-vertically-aligned-top is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:85%\">\n<p class=\"wp-block-paragraph\">El&nbsp;<a href=\"https:\/\/irdirc.org\/\"><strong>Consorcio Internacional de Investigaci\u00f3n sobre Enfermedades Raras (IRDiRC)<\/strong><\/a>&nbsp;Re\u00fane a organismos de financiaci\u00f3n gubernamentales y sin \u00e1nimo de lucro, tanto nacionales como internacionales, a empresas (incluidas las farmac\u00e9uticas y biotecnol\u00f3gicas), a organizaciones paraguas de defensa de los pacientes y a investigadores cient\u00edficos con el fin de promover la colaboraci\u00f3n internacional e impulsar la investigaci\u00f3n sobre las enfermedades raras en todo el mundo. Cabe destacar que el alcance del Consorcio es global e incluye a partes interesadas de \u00c1frica, Asia, Australia, Am\u00e9rica del Norte y Europa.<\/p>\n<\/div>\n<\/div>\n\n\n\n<div class=\"wp-block-columns are-vertically-aligned-top is-layout-flex wp-container-core-columns-is-layout-8f761849 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-vertically-aligned-top is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:15%\">\n<figure class=\"wp-block-image size-full\"><img loading=\"lazy\" decoding=\"async\" width=\"150\" height=\"150\" src=\"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2022\/02\/Rare2030-logo.png\" alt=\"\" class=\"wp-image-277\"\/><\/figure>\n<\/div>\n\n\n\n<div class=\"wp-block-column is-vertically-aligned-top is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:85%\">\n<p class=\"wp-block-paragraph\"><strong><a href=\"https:\/\/www.rare2030.eu\/\">Rare 2030<\/a><\/strong>&nbsp;Se trata de un estudio prospectivo que recoge las aportaciones de un amplio grupo de pacientes, profesionales sanitarios y l\u00edderes de opini\u00f3n clave con el fin de proponer recomendaciones que nos conduzcan a unas pol\u00edticas mejoradas y a un futuro mejor para las personas que viven con una enfermedad rara en Europa. Se trata de un proyecto de dos a\u00f1os de duraci\u00f3n que culminar\u00e1 con una presentaci\u00f3n ante el Parlamento a finales de 2020, en la que se ofrecer\u00e1n recomendaciones sobre los \u00e1mbitos m\u00e1s cr\u00edticos que requieren pol\u00edticas s\u00f3lidas.<\/p>\n<\/div>\n<\/div>\n\n\n\n<div class=\"wp-block-columns are-vertically-aligned-top is-layout-flex wp-container-core-columns-is-layout-8f761849 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-vertically-aligned-top is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:15%\">\n<figure class=\"wp-block-image size-full\"><img loading=\"lazy\" decoding=\"async\" width=\"399\" height=\"126\" src=\"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2022\/02\/share4rare.jpeg\" alt=\"\" class=\"wp-image-278\"\/><\/figure>\n<\/div>\n\n\n\n<div class=\"wp-block-column is-vertically-aligned-top is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:85%\">\n<p class=\"wp-block-paragraph\"><strong><a href=\"https:\/\/www.share4rare.org\/\">Share4Rare<\/a>&nbsp;<\/strong>Es un proyecto europeo cuyo objetivo es mejorar la calidad de vida de las personas afectadas por una enfermedad rara. Trabajando juntos, podemos crear una comunidad que permita convertir las enfermedades raras en enfermedades conocidas, impulsando la investigaci\u00f3n y compartiendo conocimientos.<\/p>\n<\/div>\n<\/div>\n\n\n\n<div class=\"wp-block-columns are-vertically-aligned-top is-layout-flex wp-container-core-columns-is-layout-8f761849 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-vertically-aligned-top is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:15%\">\n<figure class=\"wp-block-image size-full\"><img loading=\"lazy\" decoding=\"async\" width=\"375\" height=\"135\" src=\"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2022\/02\/ECRIN.jpeg\" alt=\"\" class=\"wp-image-279\"\/><\/figure>\n<\/div>\n\n\n\n<div class=\"wp-block-column is-vertically-aligned-top is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:85%\">\n<p class=\"wp-block-paragraph\"><strong><a href=\"https:\/\/ecrin.org\/\">ECRIN<\/a>&nbsp;<\/strong>tiene como objetivo generar evidencia cient\u00edfica para optimizar la pr\u00e1ctica m\u00e9dica. Para hacer realidad esta visi\u00f3n, ECRIN apoya la realizaci\u00f3n de investigaci\u00f3n cl\u00ednica multinacional en Europa mediante la gesti\u00f3n y el apoyo a ensayos cl\u00ednicos transfronterizos, la conexi\u00f3n de redes y el asesoramiento y la aplicaci\u00f3n de pol\u00edticas; de este modo, ECRIN fomenta el flujo de conocimientos, la competitividad y la integraci\u00f3n en la investigaci\u00f3n cl\u00ednica europea.<\/p>\n<\/div>\n<\/div>\n\n\n\n<div class=\"wp-block-columns are-vertically-aligned-top is-layout-flex wp-container-core-columns-is-layout-8f761849 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-vertically-aligned-top is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:15%\">\n<figure class=\"wp-block-image size-full\"><img loading=\"lazy\" decoding=\"async\" width=\"318\" height=\"158\" src=\"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2022\/02\/BBMR-ERIC.png\" alt=\"\" class=\"wp-image-280\"\/><\/figure>\n<\/div>\n\n\n\n<div class=\"wp-block-column is-vertically-aligned-top is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:85%\">\n<p class=\"wp-block-paragraph\"><strong><a href=\"https:\/\/www.bbmri-eric.eu\/\">BBMRI-ERIC<\/a><\/strong>&nbsp;es una infraestructura europea de investigaci\u00f3n dedicada a los biobancos que re\u00fane a todos los principales actores del sector \u2014investigadores, gestores de biobancos, la industria y los pacientes\u2014 con el fin de impulsar la investigaci\u00f3n biom\u00e9dica. Con ese fin, ofrece servicios de gesti\u00f3n de la calidad, apoyo en cuestiones \u00e9ticas, legales y sociales, as\u00ed como una serie de herramientas en l\u00ednea y soluciones de software para los gestores de biobancos y los investigadores. En \u00faltima instancia, el objetivo es hacer posibles nuevos tratamientos.<\/p>\n<\/div>\n<\/div>\n\n\n\n<div class=\"wp-block-columns are-vertically-aligned-top is-layout-flex wp-container-core-columns-is-layout-8f761849 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-vertically-aligned-top is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:15%\">\n<figure class=\"wp-block-image size-full\"><img loading=\"lazy\" decoding=\"async\" width=\"768\" height=\"124\" src=\"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2022\/02\/RD-Connect.png\" alt=\"\" class=\"wp-image-281\" srcset=\"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2022\/02\/RD-Connect.png 768w, https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2022\/02\/RD-Connect-600x97.png 600w\" sizes=\"auto, (max-width: 768px) 100vw, 768px\" \/><\/figure>\n<\/div>\n\n\n\n<div class=\"wp-block-column is-vertically-aligned-top is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:85%\">\n<p class=\"wp-block-paragraph\"><strong><a href=\"https:\/\/rd-connect.eu\/\">RD-Connect&nbsp;<\/a><\/strong>es una comunidad internacional que trabaja para acelerar la investigaci\u00f3n sobre enfermedades raras en todo el mundo mediante la puesta a disposici\u00f3n de la plataforma global RD-Connect, que facilita la investigaci\u00f3n sobre estas enfermedades al conectar bases de datos, registros de pacientes, biobancos y datos de bioinform\u00e1tica cl\u00ednica en un recurso central para investigadores de todo el mundo.<\/p>\n<\/div>\n<\/div>\n\n\n\n<p class=\"wp-block-paragraph\"><\/p>\n\n\n\n<div class=\"wp-block-columns are-vertically-aligned-top is-layout-flex wp-container-core-columns-is-layout-8f761849 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-vertically-aligned-top is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:15%\">\n<figure class=\"wp-block-image size-full\"><img loading=\"lazy\" decoding=\"async\" width=\"168\" height=\"180\" src=\"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2022\/02\/Elixir-Europe.jpeg\" alt=\"\" class=\"wp-image-282\"\/><\/figure>\n<\/div>\n\n\n\n<div class=\"wp-block-column is-vertically-aligned-top is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:85%\">\n<p class=\"wp-block-paragraph\">El objetivo de<strong>&nbsp;<a href=\"https:\/\/elixir-europe.org\/\">ELIXIR<\/a>&nbsp;<\/strong>consiste en coordinar estos recursos para que formen una \u00fanica infraestructura. Esta infraestructura facilita a los cient\u00edficos la b\u00fasqueda y el intercambio de datos, as\u00ed como el intercambio de conocimientos especializados y el acuerdo sobre las mejores pr\u00e1cticas. En \u00faltima instancia, les ayudar\u00e1 a obtener nuevos conocimientos sobre el funcionamiento de los organismos vivos.<\/p>\n<\/div>\n<\/div>\n\n\n\n<div class=\"wp-block-columns are-vertically-aligned-top is-layout-flex wp-container-core-columns-is-layout-8f761849 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-vertically-aligned-top is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:15%\">\n<figure class=\"wp-block-image size-full\"><img loading=\"lazy\" decoding=\"async\" width=\"960\" height=\"960\" src=\"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2022\/02\/European-Society-Human-Genetics.png\" alt=\"\" class=\"wp-image-283\" srcset=\"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2022\/02\/European-Society-Human-Genetics.png 960w, https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2022\/02\/European-Society-Human-Genetics-600x600.png 600w, https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2022\/02\/European-Society-Human-Genetics-300x300.png 300w, https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2022\/02\/European-Society-Human-Genetics-768x768.png 768w\" sizes=\"auto, (max-width: 960px) 100vw, 960px\" \/><\/figure>\n<\/div>\n\n\n\n<div class=\"wp-block-column is-vertically-aligned-top is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:85%\">\n<p class=\"wp-block-paragraph\"><strong>Sociedad Europea de Gen\u00e9tica Humana<\/strong> es una organizaci\u00f3n internacional sin \u00e1nimo de lucro reconocida, y uno de los miembros fundadores de la Federaci\u00f3n Internacional de Sociedades de Gen\u00e9tica Humana. Su objetivo es promover la investigaci\u00f3n, facilitar la comunicaci\u00f3n y fomentar las mejores pr\u00e1cticas en las aplicaciones de la gen\u00e9tica humana y m\u00e9dica, especialmente en Europa<\/p>\n<\/div>\n<\/div>","protected":false},"excerpt":{"rendered":"<p>What is an ERN? European Reference Networks (ERNs) are networks of European healthcare providers expert in a particular set of rare diseases that were established to pool together clinical expertise available across Europe and to concentrate knowledge and resources on rare and\/or complex diseases. The need for ERNs No country alone has the knowledge and [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":0,"parent":17,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"template-pages\/template-page-navigation-submenu.php","meta":{"_acf_changed":false,"footnotes":""},"class_list":["post-56","page","type-page","status-publish","hentry"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.7 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>What are ERNs ? - ERN ITHACA<\/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:\/\/ern-ithaca.eu\/es\/about-us\/european-reference-networks\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"What are ERNs ? - ERN ITHACA\" \/>\n<meta property=\"og:description\" content=\"What is an ERN? European Reference Networks (ERNs) are networks of European healthcare providers expert in a particular set of rare diseases that were established to pool together clinical expertise available across Europe and to concentrate knowledge and resources on rare and\/or complex diseases. The need for ERNs No country alone has the knowledge and [&hellip;]\" \/>\n<meta property=\"og:url\" content=\"https:\/\/ern-ithaca.eu\/es\/about-us\/european-reference-networks\/\" \/>\n<meta property=\"og:site_name\" content=\"ERN ITHACA\" \/>\n<meta property=\"article:modified_time\" content=\"2024-10-29T14:29:08+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2024\/10\/Capture-decran-2024-10-29-144932.png\" \/>\n\t<meta property=\"og:image:width\" content=\"502\" \/>\n\t<meta property=\"og:image:height\" content=\"196\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/png\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:site\" content=\"@ERNIthaca\" \/>\n<meta name=\"twitter:label1\" content=\"Tiempo de lectura\" \/>\n\t<meta name=\"twitter:data1\" content=\"3 minutos\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\\\/\\\/schema.org\",\"@graph\":[{\"@type\":\"WebPage\",\"@id\":\"https:\\\/\\\/ern-ithaca.eu\\\/about-us\\\/european-reference-networks\\\/\",\"url\":\"https:\\\/\\\/ern-ithaca.eu\\\/about-us\\\/european-reference-networks\\\/\",\"name\":\"What are ERNs ? - ERN ITHACA\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/ern-ithaca.eu\\\/#website\"},\"primaryImageOfPage\":{\"@id\":\"https:\\\/\\\/ern-ithaca.eu\\\/about-us\\\/european-reference-networks\\\/#primaryimage\"},\"image\":{\"@id\":\"https:\\\/\\\/ern-ithaca.eu\\\/about-us\\\/european-reference-networks\\\/#primaryimage\"},\"thumbnailUrl\":\"https:\\\/\\\/ern-ithaca.eu\\\/wp-content\\\/uploads\\\/2024\\\/10\\\/Capture-decran-2024-10-29-144932.png\",\"datePublished\":\"2022-01-25T16:20:12+00:00\",\"dateModified\":\"2024-10-29T14:29:08+00:00\",\"breadcrumb\":{\"@id\":\"https:\\\/\\\/ern-ithaca.eu\\\/about-us\\\/european-reference-networks\\\/#breadcrumb\"},\"inLanguage\":\"es\",\"potentialAction\":[{\"@type\":\"ReadAction\",\"target\":[\"https:\\\/\\\/ern-ithaca.eu\\\/about-us\\\/european-reference-networks\\\/\"]}]},{\"@type\":\"ImageObject\",\"inLanguage\":\"es\",\"@id\":\"https:\\\/\\\/ern-ithaca.eu\\\/about-us\\\/european-reference-networks\\\/#primaryimage\",\"url\":\"https:\\\/\\\/ern-ithaca.eu\\\/wp-content\\\/uploads\\\/2024\\\/10\\\/Capture-decran-2024-10-29-144932.png\",\"contentUrl\":\"https:\\\/\\\/ern-ithaca.eu\\\/wp-content\\\/uploads\\\/2024\\\/10\\\/Capture-decran-2024-10-29-144932.png\"},{\"@type\":\"BreadcrumbList\",\"@id\":\"https:\\\/\\\/ern-ithaca.eu\\\/about-us\\\/european-reference-networks\\\/#breadcrumb\",\"itemListElement\":[{\"@type\":\"ListItem\",\"position\":1,\"name\":\"Home\",\"item\":\"https:\\\/\\\/ern-ithaca.eu\\\/\"},{\"@type\":\"ListItem\",\"position\":2,\"name\":\"About Us\",\"item\":\"https:\\\/\\\/ern-ithaca.eu\\\/about-us\\\/\"},{\"@type\":\"ListItem\",\"position\":3,\"name\":\"What are ERNs ?\"}]},{\"@type\":\"WebSite\",\"@id\":\"https:\\\/\\\/ern-ithaca.eu\\\/#website\",\"url\":\"https:\\\/\\\/ern-ithaca.eu\\\/\",\"name\":\"ERN ITHACA\",\"description\":\"WELCOME TO ERN-ITHACA WEBSITE!\",\"publisher\":{\"@id\":\"https:\\\/\\\/ern-ithaca.eu\\\/#organization\"},\"potentialAction\":[{\"@type\":\"SearchAction\",\"target\":{\"@type\":\"EntryPoint\",\"urlTemplate\":\"https:\\\/\\\/ern-ithaca.eu\\\/?s={search_term_string}\"},\"query-input\":{\"@type\":\"PropertyValueSpecification\",\"valueRequired\":true,\"valueName\":\"search_term_string\"}}],\"inLanguage\":\"es\"},{\"@type\":\"Organization\",\"@id\":\"https:\\\/\\\/ern-ithaca.eu\\\/#organization\",\"name\":\"ERN-ITHACA\",\"url\":\"https:\\\/\\\/ern-ithaca.eu\\\/\",\"logo\":{\"@type\":\"ImageObject\",\"inLanguage\":\"es\",\"@id\":\"https:\\\/\\\/ern-ithaca.eu\\\/#\\\/schema\\\/logo\\\/image\\\/\",\"url\":\"https:\\\/\\\/ern-ithaca.eu\\\/wp-content\\\/uploads\\\/2022\\\/02\\\/Logo-ERN-ITHACA.jpg\",\"contentUrl\":\"https:\\\/\\\/ern-ithaca.eu\\\/wp-content\\\/uploads\\\/2022\\\/02\\\/Logo-ERN-ITHACA.jpg\",\"width\":454,\"height\":172,\"caption\":\"ERN-ITHACA\"},\"image\":{\"@id\":\"https:\\\/\\\/ern-ithaca.eu\\\/#\\\/schema\\\/logo\\\/image\\\/\"},\"sameAs\":[\"https:\\\/\\\/x.com\\\/ERNIthaca\",\"https:\\\/\\\/www.linkedin.com\\\/company\\\/ithaca-european-reference-network-on-congenital-malformations-ans-rare-intellectual-disability\\\/?viewAsMember=true\"]}]}<\/script>\n<!-- \/ Yoast SEO plugin. -->","yoast_head_json":{"title":"What are ERNs ? - ERN ITHACA","robots":{"index":"index","follow":"follow","max-snippet":"max-snippet:-1","max-image-preview":"max-image-preview:large","max-video-preview":"max-video-preview:-1"},"canonical":"https:\/\/ern-ithaca.eu\/es\/about-us\/european-reference-networks\/","og_locale":"es_ES","og_type":"article","og_title":"What are ERNs ? - ERN ITHACA","og_description":"What is an ERN? European Reference Networks (ERNs) are networks of European healthcare providers expert in a particular set of rare diseases that were established to pool together clinical expertise available across Europe and to concentrate knowledge and resources on rare and\/or complex diseases. The need for ERNs No country alone has the knowledge and [&hellip;]","og_url":"https:\/\/ern-ithaca.eu\/es\/about-us\/european-reference-networks\/","og_site_name":"ERN ITHACA","article_modified_time":"2024-10-29T14:29:08+00:00","og_image":[{"width":502,"height":196,"url":"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2024\/10\/Capture-decran-2024-10-29-144932.png","type":"image\/png"}],"twitter_card":"summary_large_image","twitter_site":"@ERNIthaca","twitter_misc":{"Tiempo de lectura":"3 minutos"},"schema":{"@context":"https:\/\/schema.org","@graph":[{"@type":"WebPage","@id":"https:\/\/ern-ithaca.eu\/about-us\/european-reference-networks\/","url":"https:\/\/ern-ithaca.eu\/about-us\/european-reference-networks\/","name":"What are ERNs ? - ERN ITHACA","isPartOf":{"@id":"https:\/\/ern-ithaca.eu\/#website"},"primaryImageOfPage":{"@id":"https:\/\/ern-ithaca.eu\/about-us\/european-reference-networks\/#primaryimage"},"image":{"@id":"https:\/\/ern-ithaca.eu\/about-us\/european-reference-networks\/#primaryimage"},"thumbnailUrl":"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2024\/10\/Capture-decran-2024-10-29-144932.png","datePublished":"2022-01-25T16:20:12+00:00","dateModified":"2024-10-29T14:29:08+00:00","breadcrumb":{"@id":"https:\/\/ern-ithaca.eu\/about-us\/european-reference-networks\/#breadcrumb"},"inLanguage":"es","potentialAction":[{"@type":"ReadAction","target":["https:\/\/ern-ithaca.eu\/about-us\/european-reference-networks\/"]}]},{"@type":"ImageObject","inLanguage":"es","@id":"https:\/\/ern-ithaca.eu\/about-us\/european-reference-networks\/#primaryimage","url":"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2024\/10\/Capture-decran-2024-10-29-144932.png","contentUrl":"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2024\/10\/Capture-decran-2024-10-29-144932.png"},{"@type":"BreadcrumbList","@id":"https:\/\/ern-ithaca.eu\/about-us\/european-reference-networks\/#breadcrumb","itemListElement":[{"@type":"ListItem","position":1,"name":"Home","item":"https:\/\/ern-ithaca.eu\/"},{"@type":"ListItem","position":2,"name":"About Us","item":"https:\/\/ern-ithaca.eu\/about-us\/"},{"@type":"ListItem","position":3,"name":"What are ERNs ?"}]},{"@type":"WebSite","@id":"https:\/\/ern-ithaca.eu\/#website","url":"https:\/\/ern-ithaca.eu\/","name":"ERN ITHACA","description":"WELCOME TO ERN-ITHACA WEBSITE!","publisher":{"@id":"https:\/\/ern-ithaca.eu\/#organization"},"potentialAction":[{"@type":"SearchAction","target":{"@type":"EntryPoint","urlTemplate":"https:\/\/ern-ithaca.eu\/?s={search_term_string}"},"query-input":{"@type":"PropertyValueSpecification","valueRequired":true,"valueName":"search_term_string"}}],"inLanguage":"es"},{"@type":"Organization","@id":"https:\/\/ern-ithaca.eu\/#organization","name":"ERN-ITHACA","url":"https:\/\/ern-ithaca.eu\/","logo":{"@type":"ImageObject","inLanguage":"es","@id":"https:\/\/ern-ithaca.eu\/#\/schema\/logo\/image\/","url":"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2022\/02\/Logo-ERN-ITHACA.jpg","contentUrl":"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2022\/02\/Logo-ERN-ITHACA.jpg","width":454,"height":172,"caption":"ERN-ITHACA"},"image":{"@id":"https:\/\/ern-ithaca.eu\/#\/schema\/logo\/image\/"},"sameAs":["https:\/\/x.com\/ERNIthaca","https:\/\/www.linkedin.com\/company\/ithaca-european-reference-network-on-congenital-malformations-ans-rare-intellectual-disability\/?viewAsMember=true"]}]}},"_links":{"self":[{"href":"https:\/\/ern-ithaca.eu\/es\/wp-json\/wp\/v2\/pages\/56","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/ern-ithaca.eu\/es\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/ern-ithaca.eu\/es\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/ern-ithaca.eu\/es\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/ern-ithaca.eu\/es\/wp-json\/wp\/v2\/comments?post=56"}],"version-history":[{"count":13,"href":"https:\/\/ern-ithaca.eu\/es\/wp-json\/wp\/v2\/pages\/56\/revisions"}],"predecessor-version":[{"id":6276,"href":"https:\/\/ern-ithaca.eu\/es\/wp-json\/wp\/v2\/pages\/56\/revisions\/6276"}],"up":[{"embeddable":true,"href":"https:\/\/ern-ithaca.eu\/es\/wp-json\/wp\/v2\/pages\/17"}],"wp:attachment":[{"href":"https:\/\/ern-ithaca.eu\/es\/wp-json\/wp\/v2\/media?parent=56"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}