{"id":45,"date":"2022-01-25T17:14:53","date_gmt":"2022-01-25T16:14:53","guid":{"rendered":"https:\/\/ern-ithaca.eu\/?page_id=45"},"modified":"2024-10-31T10:11:43","modified_gmt":"2024-10-31T09:11:43","slug":"who-we-are","status":"publish","type":"page","link":"https:\/\/ern-ithaca.eu\/es\/about-us\/who-we-are\/","title":{"rendered":"Qui\u00e9nes somos"},"content":{"rendered":"<h2 class=\"wp-block-heading\">\u00bfQu\u00e9 es el ERN-ITHACA?<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">El<strong> ERN ITHACA<\/strong> es el <a href=\"https:\/\/ern-ithaca.eu\/es\/about-us\/european-reference-networks\/\">Red Europea de Referencia<\/a> (ERN) para las malformaciones raras, las discapacidades intelectuales y los trastornos del desarrollo neurol\u00f3gico.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Fue creada por primera vez por la profesora Jill Clayton-Smith y el Manchester University NHS Foundation Trust en 2017. Tras el exitoso desarrollo de la red, su coordinaci\u00f3n pas\u00f3 a manos de <strong>Asistencia P\u00fablica \u2013 Hospitales de Par\u00eds (APHP) <\/strong>en noviembre de 2018, ante la perspectiva del Brexit. El profesor Alain Verloes, director del Departamento de Gen\u00e9tica Cl\u00ednica Robert Debr\u00e9, fue elegido as\u00ed nuevo coordinador de la red.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">En la actualidad, la red est\u00e1 formada por 71 centros cl\u00ednicos especializados y 45 grupos europeos de defensa de los pacientes (EPAG) (v\u00e9ase la lista de nuestros centros especializados y ePAG). Mediante el intercambio de conocimientos, experiencia y recursos, nuestra comunidad tiene como objetivo mejorar la atenci\u00f3n a los pacientes, la investigaci\u00f3n y el acceso a la informaci\u00f3n sobre malformaciones cong\u00e9nitas raras y discapacidad intelectual.<\/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:38px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<p class=\"wp-block-paragraph\"><\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">El nombre <strong>ITHACA<\/strong>&nbsp;significa&nbsp;<strong>I<\/strong>discapacidad intelectual,&nbsp;<strong>T<\/strong>eleHealth,&nbsp;<strong>A<\/strong>autismo y&nbsp;<strong>C<\/strong>cong\u00e9nito&nbsp;<strong>A<\/strong>anomal\u00edas. Tambi\u00e9n se refiere a la <strong>Odisea<\/strong> lo que supone para muchas familias el proceso de diagn\u00f3stico de un ni\u00f1o con una enfermedad del desarrollo poco frecuente.<\/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 is-resized\"><img loading=\"lazy\" decoding=\"async\" width=\"765\" height=\"415\" src=\"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2024\/10\/Capture-decran-2024-10-29-141525.png\" alt=\"\" class=\"wp-image-6253\" style=\"width:277px;height:auto\" srcset=\"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2024\/10\/Capture-decran-2024-10-29-141525.png 765w, https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2024\/10\/Capture-decran-2024-10-29-141525-600x325.png 600w\" sizes=\"auto, (max-width: 765px) 100vw, 765px\" \/><\/figure>\n<\/div>\n<\/div>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>En resumen, somos una red centrada en el paciente cuyo objetivo es satisfacer las necesidades de una atenci\u00f3n sanitaria altamente especializada para pacientes con s\u00edndromes de malformaciones raras y trastornos intelectuales u otros trastornos del desarrollo neurol\u00f3gico raros, tanto de origen gen\u00e9tico (gen\u00f3mico o cromos\u00f3mico) como ambiental, tanto diagnosticados como sin diagnosticar.<\/strong><\/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\">ERN-ITHACA: Red y gobernanza<\/h2>\n\n\n\n<div style=\"height:14px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/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-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:66.66%\">\n<h3 class=\"wp-block-heading\">Los miembros de nuestra red<\/h3>\n\n\n\n<p class=\"wp-block-paragraph\"><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Nuestros miembros son<strong> Profesionales sanitarios europeos (HCP)<\/strong>, m\u00e1s concretamente <strong>Centros hospitalarios universitarios especializados en s\u00edndromes malformativos raros y trastornos del desarrollo neurol\u00f3gico<\/strong>. A d\u00eda de hoy, la ERN cuenta con 71 centros procedentes de 25 de los 27 Estados miembros de la UE, adem\u00e1s de Noruega. <strong>Nuestra comunidad de profesionales sanitarios presta cada a\u00f1o la atenci\u00f3n necesaria a unos 51 500 nuevos pacientes.<\/strong> a quienes se les ha diagnosticado una anomal\u00eda del desarrollo poco frecuente. La ERN ITHACA es tambi\u00e9n la que cuenta con un mayor n\u00famero de entidades, por lo que tiene el mayor alcance y la mayor cobertura de enfermedades de todas las ERN.<\/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=\"619\" height=\"560\" src=\"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2024\/10\/ERNRND-CPMS-case-discussion-1-1.png\" alt=\"\" class=\"wp-image-6245\" srcset=\"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2024\/10\/ERNRND-CPMS-case-discussion-1-1.png 619w, https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2024\/10\/ERNRND-CPMS-case-discussion-1-1-600x543.png 600w\" sizes=\"auto, (max-width: 619px) 100vw, 619px\" \/><\/figure>\n<\/div>\n<\/div>\n\n\n\n<p class=\"wp-block-paragraph\">Adem\u00e1s de estos centros especializados, la red ITHACA tambi\u00e9n cuenta con nuestro gran <strong>Comunidad ePAGs<\/strong>: a fecha de 2024, 45 grupos de defensa europeos, tambi\u00e9n conocidos como asociaciones de pacientes, se han sumado a la ERN para colaborar con nuestros m\u00e9dicos e investigadores. Para obtener m\u00e1s informaci\u00f3n sobre nuestra red ePAGs, puedes consultar nuestra <a href=\"https:\/\/ern-ithaca.eu\/es\/about-us\/our-epags-network\/\">p\u00e1gina web espec\u00edfica<\/a>.<\/p>\n\n\n\n<div style=\"height:25px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<h3 class=\"wp-block-heading\">Consejo de Administraci\u00f3n&nbsp;<\/h3>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>La Junta Directiva de ITHACA<\/strong> Est\u00e1 compuesto por los representantes de los 71 miembros, los miembros del Comit\u00e9 Ejecutivo que a\u00fan no son representantes de un HCP y los 5 miembros del Consejo Asesor de Pacientes. Es el m\u00e1ximo \u00f3rgano de decisi\u00f3n de la ERN ITHACA y, por lo tanto, define las misiones y la orientaci\u00f3n estrat\u00e9gica de la red: c\u00f3mo deben desarrollarse y ampliarse las actividades de la red, y c\u00f3mo colaborar con otras iniciativas y socios europeos. La Junta se re\u00fane dos veces al a\u00f1o para debatir estas cuestiones estrat\u00e9gicas.<\/p>\n\n\n\n<figure class=\"wp-block-image size-full is-resized\"><img loading=\"lazy\" decoding=\"async\" width=\"1400\" height=\"1050\" src=\"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2024\/10\/ERN-ITHACA-Board-Meeting-2021-Madrid.jpeg\" alt=\"\" class=\"wp-image-6246\" style=\"width:502px;height:auto\" srcset=\"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2024\/10\/ERN-ITHACA-Board-Meeting-2021-Madrid.jpeg 1400w, https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2024\/10\/ERN-ITHACA-Board-Meeting-2021-Madrid-600x450.jpeg 600w, https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2024\/10\/ERN-ITHACA-Board-Meeting-2021-Madrid-768x576.jpeg 768w, https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2024\/10\/ERN-ITHACA-Board-Meeting-2021-Madrid-1320x990.jpeg 1320w\" sizes=\"auto, (max-width: 1400px) 100vw, 1400px\" \/><\/figure>\n\n\n\n<p class=\"wp-block-paragraph\"><em>Reuni\u00f3n de la Junta Directiva de ERN ITHACA de 2022 en Madrid<\/em><\/p>\n\n\n\n<div style=\"height:25px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<h3 class=\"wp-block-heading\">Comit\u00e9 Ejecutivo&nbsp;<\/h3>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>El Comit\u00e9 Ejecutivo <\/strong>(El Comit\u00e9 Ejecutivo) facilita la difusi\u00f3n de informaci\u00f3n de la UE a los 71 centros de supercomputaci\u00f3n (HPC) de la red. Adem\u00e1s, comparte novedades sobre los grupos de trabajo y garantiza la comunicaci\u00f3n entre ellos. Los miembros del Comit\u00e9 Ejecutivo son:&nbsp;<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>El coordinador de ERN-ITHACA&nbsp;<\/li>\n\n\n\n<li>Todos los jefes de proyecto del equipo de coordinaci\u00f3n<\/li>\n\n\n\n<li>El presidente y uno de los copresidentes de cada grupo de trabajo<\/li>\n\n\n\n<li>El presidente y el copresidente del Consejo Asesor de Pacientes<\/li>\n\n\n\n<li>Un representante de Orphanet, de EJP-RD y de Solve RD&nbsp;<\/li>\n<\/ul>\n\n\n\n<p class=\"wp-block-paragraph\">Cada miembro del Comit\u00e9 Ejecutivo tiene un voto, salvo el Equipo de Coordinaci\u00f3n, que cuenta con dos en total. El coordinador podr\u00e1 invitar a las reuniones de la Junta a todos los copresidentes de los grupos de trabajo que no tengan derecho a voto. En caso de empate en la votaci\u00f3n, prevalecer\u00e1 el voto del coordinador de la ERN.&nbsp;<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">El Comit\u00e9 Ejecutivo celebra seis reuniones bimestrales al a\u00f1o: cinco reuniones virtuales (cada dos meses) y una reuni\u00f3n presencial que tiene lugar durante el Congreso de la Sociedad Europea de Gen\u00e9tica Humana (ESHG). El orden del d\u00eda y las actas los elaboran los responsables de proyecto.<\/p>\n\n\n\n<figure class=\"wp-block-image size-full is-resized\"><img loading=\"lazy\" decoding=\"async\" width=\"800\" height=\"600\" src=\"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2024\/10\/P1028126.jpg\" alt=\"\" class=\"wp-image-6261\" style=\"width:430px;height:auto\" srcset=\"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2024\/10\/P1028126.jpg 800w, https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2024\/10\/P1028126-600x450.jpg 600w, https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2024\/10\/P1028126-768x576.jpg 768w\" sizes=\"auto, (max-width: 800px) 100vw, 800px\" \/><\/figure>\n\n\n\n<p class=\"wp-block-paragraph\"><em>Reuni\u00f3n presencial del Comit\u00e9 Ejecutivo en Berl\u00edn, Congreso de la ESHG de 2024<\/em><\/p>\n\n\n\n<div style=\"height:25px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<h3 class=\"wp-block-heading\">Paquetes de trabajo<\/h3>\n\n\n\n<p class=\"wp-block-paragraph\">Las actividades de la ERN ITHACA se organizan en&nbsp;<strong>10 paquetes de trabajo<\/strong>. Los seis primeros siguen las recomendaciones de la Comisi\u00f3n Europea para armonizar la estructura organizativa en todas las RER. A esta estructura b\u00e1sica, ITHACA ha a\u00f1adido cuatro paquetes de trabajo: dos dedicados a actividades estrechamente vinculadas a la investigaci\u00f3n cl\u00ednica (WP Investigaci\u00f3n y WG Registro), y los dos restantes que abarcan las actividades orientadas al paciente (compartir, cuidar y curar) en los dos campos de especializaci\u00f3n de ERN-ITHACA: los trastornos del desarrollo neurol\u00f3gico y los s\u00edndromes de malformaci\u00f3n.<\/p>\n\n\n\n<div style=\"height:25px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<h3 class=\"wp-block-heading\">Grupos de trabajo y grupos operativos&nbsp;<\/h3>\n\n\n\n<p class=\"wp-block-paragraph\">Los grupos de trabajo son los<strong>&nbsp;fuerza motriz<\/strong>&nbsp;Detr\u00e1s de las acciones de la ERN: se encargan de plasmar los ejes estrat\u00e9gicos definidos por la Junta Directiva y el Comit\u00e9 Ejecutivo en proyectos y acciones concretas. Un paquete de trabajo puede involucrar a varios grupos de trabajo, y la asignaci\u00f3n de un grupo de trabajo a un paquete de trabajo puede ir cambiando con el tiempo. Cada grupo de trabajo est\u00e1 dirigido por un presidente, que es miembro de un HCP del ITHACA y es elegido por su experiencia en el \u00e1mbito correspondiente. A continuaci\u00f3n, el presidente pone en marcha el grupo de trabajo reuniendo a otros siete expertos para que colaboren en un tema concreto.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">La actividad dentro de un grupo de trabajo se divide en&nbsp;<strong>varios grupos de trabajo<\/strong>, cada uno de ellos supervisado por un responsable de grupo de trabajo, que act\u00faa como uno de los copresidentes del grupo de trabajo. Una misma persona puede ser responsable de varios grupos de trabajo y el propio presidente es responsable de al menos un grupo de trabajo. Los copresidentes son nombrados en funci\u00f3n de su experiencia personal y no tienen por qu\u00e9 ser necesariamente miembros de un HCP.<\/p>\n\n\n\n<figure class=\"wp-block-image size-full is-resized\"><img loading=\"lazy\" decoding=\"async\" width=\"564\" height=\"373\" src=\"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2024\/10\/image-1-1.png\" alt=\"\" class=\"wp-image-6247\" style=\"width:461px;height:auto\"\/><\/figure>\n\n\n\n<p class=\"wp-block-paragraph\"><em>Organigrama de ERN-ITHACA<\/em><\/p>\n\n\n\n<div style=\"height:32px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>","protected":false},"excerpt":{"rendered":"<p>What is the ERN-ITHACA The ERN ITHACA is the European Reference Network (ERN) for rare malformative conditions, intellectual disabilities and neurodevelopmental disorders. It was first established by Pr. Jill Clayton-Smith and the Manchester University NHS Foundation Trust, in 2017. After a successful development of the network, its coordination was transferred to French Assistance Publique &#8211; [&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-45","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>Who We Are - 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\/who-we-are\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Who We Are - ERN ITHACA\" \/>\n<meta property=\"og:description\" content=\"What is the ERN-ITHACA The ERN ITHACA is the European Reference Network (ERN) for rare malformative conditions, intellectual disabilities and neurodevelopmental disorders. 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