{"id":33604,"date":"2026-07-28T14:50:43","date_gmt":"2026-07-28T12:50:43","guid":{"rendered":"https:\/\/dupmecp2.eu\/?p=33604"},"modified":"2026-07-31T14:53:47","modified_gmt":"2026-07-31T12:53:47","slug":"un-nuevo-capitulo-de-los-odm","status":"publish","type":"post","link":"https:\/\/dupmecp2.eu\/es\/un-nuevo-capitulo-de-los-odm\/","title":{"rendered":"Un nuevo cap\u00edtulo para la comunidad del s\u00edndrome de duplicaci\u00f3n del gen MECP2: descubre MDG"},"content":{"rendered":"<p class=\"wp-block-paragraph\">Hoy nos enorgullece compartir con vosotros un proyecto en el que llevamos trabajando varios meses.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Se ha lanzado oficialmente la duplicaci\u00f3n global de MECP2 (MDG).<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph translation-block\">A lo largo del mes de julio, con motivo del Mes de sensibilizaci\u00f3n sobre el s\u00edndrome de duplicaci\u00f3n del gen MECP2, personas de todo el mundo se han unido en torno a un mensaje sencillo: <strong>\u00abSomos MDG.\u00bb<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">DupMECP2 se enorgullece de ser uno de los miembros fundadores de MECP2 Duplication Global (MDG), una nueva alianza internacional que re\u00fane a organizaciones comprometidas con las personas que viven con el s\u00edndrome de duplicaci\u00f3n del gen MECP2.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Hoy, esa voz se hace realidad.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>\u00bfPor qu\u00e9 MDG?<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">El s\u00edndrome de duplicaci\u00f3n del gen MECP2 es una enfermedad que afecta a familias de todo el mundo. Independientemente del pa\u00eds en el que vivan, las familias se enfrentan a retos similares: atender necesidades m\u00e9dicas complejas, encontrar informaci\u00f3n fiable, defender el acceso a una atenci\u00f3n sanitaria adecuada y mantener la esperanza en futuros tratamientos.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Desde hace muchos a\u00f1os, las organizaciones de pacientes de todo el mundo trabajan sin descanso para apoyar a las familias, sensibilizar a la sociedad y acelerar la investigaci\u00f3n. Cada organizaci\u00f3n tiene su propia historia, su comunidad y sus puntos fuertes, pero todas comparten el mismo objetivo: mejorar la vida de las personas que viven con el s\u00edndrome de duplicaci\u00f3n del gen MECP2.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">MDG naci\u00f3 de la convicci\u00f3n de que juntos podemos lograr m\u00e1s que cada uno por su cuenta.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Como hemos demostrado a lo largo de la campa\u00f1a de julio, nuestra comunidad traspasa oc\u00e9anos, idiomas y fronteras. Al trabajar juntos, nuestra voz colectiva se hace m\u00e1s fuerte.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>\u00bfQu\u00e9 es la duplicaci\u00f3n global del gen MECP2?<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">MECP2 Duplication Global (MDG) es una alianza de organizaciones sin \u00e1nimo de lucro comprometidas con la defensa de las personas afectadas por el s\u00edndrome de duplicaci\u00f3n del gen MECP2.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Al unir nuestras fuerzas, queremos reforzar la colaboraci\u00f3n internacional y coordinar nuestras acciones en los \u00e1mbitos de la sensibilizaci\u00f3n, la investigaci\u00f3n, el apoyo a las familias y la atenci\u00f3n cl\u00ednica.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">En conjunto, los ODM tienen como objetivo:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Acelerar el desarrollo de nuevas opciones terap\u00e9uticas apoyando y coordinando los esfuerzos de investigaci\u00f3n a escala mundial.<\/li>\n\n\n\n<li>Fomentar los avances en la atenci\u00f3n cl\u00ednica y mejorar el intercambio de conocimientos entre pa\u00edses.<\/li>\n\n\n\n<li>Apoyar a las familias de todo el mundo reforzando la colaboraci\u00f3n entre las organizaciones de pacientes y las comunidades afectadas.<\/li>\n\n\n\n<li>Sensibilizar sobre el s\u00edndrome de duplicaci\u00f3n del gen MECP2 a escala internacional.<\/li>\n<\/ul>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>\u00bfPor qu\u00e9 se celebra el lanzamiento el 28 de julio?<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Esta fecha no se ha elegido al azar.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">MDG se lanz\u00f3 oficialmente el 28 de julio, en referencia a la regi\u00f3n cromos\u00f3mica Xq28, situada en el cromosoma X, donde suele encontrarse el gen MECP2.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Para una comunidad unida en torno a un mismo diagn\u00f3stico gen\u00e9tico, esta fecha simboliza tanto nuestro origen com\u00fan como nuestro futuro compartido.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Qu\u00e9 significa esto para las familias<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Para las familias afectadas por el s\u00edndrome de duplicaci\u00f3n del gen MECP2, MDG representa algo sencillo pero poderoso: <strong>Juntos somos m\u00e1s fuertes.<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Tanto si vives en Europa, en Norteam\u00e9rica, en Asia o en cualquier otro lugar, formas parte de una comunidad internacional en pleno crecimiento que trabaja unida para alcanzar los mismos objetivos.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">A lo largo de la campa\u00f1a de julio, hubo un mensaje que se repiti\u00f3 una y otra vez: cada familia tiene su propia historia, pero juntas, nuestras voces forman una sola.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">MDG se basa en esta idea.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Al reunir a las organizaciones, podemos compartir nuestros recursos, aprender unos de otros, ampliar nuestras acciones de sensibilizaci\u00f3n y ofrecer a las familias acceso a una red mundial m\u00e1s s\u00f3lida y mejor conectada.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>\u00bfY ahora qu\u00e9?<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">El lanzamiento de MDG no supone el final de un camino. Supone el comienzo de un nuevo cap\u00edtulo.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">A\u00fan queda mucho por hacer. La investigaci\u00f3n debe continuar. El acceso a la atenci\u00f3n sanitaria debe mejorar. Las familias necesitan apoyo, informaci\u00f3n y esperanza.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Pero el progreso surge cuando las personas se unen. <strong>Porque cuando unimos nuestras voces, somos m\u00e1s fuertes.<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Leer m\u00e1s<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Visita la p\u00e1gina web de MDG <a href=\"https:\/\/wearemecp2dup.org\/\">www.wearemecp2dupglobal.org<\/a> para conocer las dem\u00e1s organizaciones que forman parte de la alianza, descubrir las iniciativas previstas y saber c\u00f3mo puedes apoyar los esfuerzos a nivel mundial en relaci\u00f3n con el s\u00edndrome de duplicaci\u00f3n del gen MECP2.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Una sola voz. Un movimiento mundial. Somos MECP2 Duplication Global.<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><\/p>","protected":false},"excerpt":{"rendered":"<p>Aujourd\u2019hui, nous sommes fiers de partager avec vous un projet qui se construit depuis plusieurs mois. MECP2 Duplication Global (MDG) est officiellement lanc\u00e9. Tout au long du mois de juillet, [&hellip;]<\/p>","protected":false},"author":1,"featured_media":33605,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[7],"tags":[],"class_list":["post-33604","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-actualite"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v25.8 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>Un nouveau chapitre pour la communaut\u00e9 du syndrome de duplication du g\u00e8ne MECP2 : d\u00e9couvrez MDG - DupMECP2<\/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:\/\/dupmecp2.eu\/es\/un-nuevo-capitulo-de-los-odm\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Un nouveau chapitre pour la communaut\u00e9 du syndrome de duplication du g\u00e8ne MECP2 : d\u00e9couvrez MDG - DupMECP2\" \/>\n<meta property=\"og:description\" content=\"Aujourd\u2019hui, nous sommes fiers de partager avec vous un projet qui se construit depuis plusieurs mois. 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