{"id":18357,"date":"2023-08-11T18:03:54","date_gmt":"2023-08-11T18:03:54","guid":{"rendered":"https:\/\/dupmecp2.eu\/celebration-dune-annee-de-progres-le-parcours-et-les-accomplissements-de-lassociation\/"},"modified":"2023-08-11T19:26:59","modified_gmt":"2023-08-11T19:26:59","slug":"celebracion-de-un-ano-de-avances-la-trayectoria-y-los-logros-de-la-asociacion","status":"publish","type":"post","link":"https:\/\/dupmecp2.eu\/es\/celebracion-de-un-ano-de-avances-la-trayectoria-y-los-logros-de-la-asociacion\/","title":{"rendered":"Celebraci\u00f3n de un a\u00f1o de avances: la trayectoria y los logros de la asociaci\u00f3n"},"content":{"rendered":"<p class=\"wp-block-paragraph\">Hace exactamente un a\u00f1o se fund\u00f3 la asociaci\u00f3n \u00abLasst uns MDS heilen \u2013 DupMECP2\u00bb.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">La historia de la asociaci\u00f3n comenz\u00f3 con el diagn\u00f3stico de Matteo en 2021. Tras tres a\u00f1os de incertidumbre y lucha para sus padres, David y Caroline Covini, finalmente se confirm\u00f3 el diagn\u00f3stico de s\u00edndrome de duplicaci\u00f3n del gen MECP2, lo que revel\u00f3 una enfermedad rara de la que solo se han registrado 260 casos en todo el mundo.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Unidos por el amor y la determinaci\u00f3n de marcar la diferencia para los ni\u00f1os con MDS, David y Caroline, ambos cient\u00edficos, se embarcaron en un viaje extraordinario. Este viaje ha dado lugar a la creaci\u00f3n de \u00abLasst uns MDS heilen\u00bb, una asociaci\u00f3n dedicada a acelerar la investigaci\u00f3n, ofrecer apoyo y fomentar la unidad entre las familias que se enfrentan a este reto.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">En mayo de 2022, mientras daban testimonio de la lucha de los padres frente a las enfermedades raras y sensibilizaban a los medios de comunicaci\u00f3n sobre el s\u00edndrome de duplicaci\u00f3n del gen MECP2 (MDS), los Covini se cruzaron en el camino de las familias Molnar y Curic, tambi\u00e9n afectadas por este s\u00edndrome. Con la firme motivaci\u00f3n de contribuir a las iniciativas en favor de sus hijos, estas dos familias se han incorporado al consejo de administraci\u00f3n de la asociaci\u00f3n, formando as\u00ed un equipo s\u00f3lido y decidido.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Esta fecha no solo marca la creaci\u00f3n de la asociaci\u00f3n, sino que tambi\u00e9n celebra los incre\u00edbles esfuerzos realizados en la lucha contra el s\u00edndrome de duplicaci\u00f3n del gen MECP2. En tan solo un a\u00f1o, se han llevado a cabo iniciativas destacadas:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li><strong>Un equipo s\u00f3lido y apoyo a nivel mundial:<\/strong> La junta directiva de la asociaci\u00f3n, junto con expertos cient\u00edficos, familiares y amigos, ha reunido a m\u00e1s de 130 miembros procedentes de m\u00e1s de 10 pa\u00edses. Juntos formamos una red mundial decidida a cambiar las cosas.<\/li>\n<\/ul>\n\n\n\n<div style=\"height:10px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<ul class=\"wp-block-list\">\n<li><strong>Una plataforma informativa multiling\u00fce:<\/strong> La asociaci\u00f3n ha puesto en marcha <a href=\"https:\/\/dupmecp2.eu\/es\">www.dupmecp2.eu<\/a>, una p\u00e1gina web que ofrece informaci\u00f3n en varios idiomas sobre el s\u00edndrome de duplicaci\u00f3n del gen MECP2. Esta plataforma sirve para recopilar conocimientos y compartir informaci\u00f3n nueva con el fin de apoyar a las familias en su proceso.<\/li>\n<\/ul>\n\n\n\n<div style=\"height:10px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<ul class=\"wp-block-list\">\n<li><strong>Eventos y recaudaci\u00f3n de fondos:<\/strong> La primera campa\u00f1a de recaudaci\u00f3n de fondos en l\u00ednea y el primer evento permitieron sensibilizar a la sociedad y demostrar el poder de la solidaridad. Se han recibido generosas donaciones y, en estos momentos, se est\u00e1 planificando un ambicioso proyecto de recaudaci\u00f3n masiva de fondos, cuyo lanzamiento est\u00e1 previsto para oto\u00f1o.<\/li>\n<\/ul>\n\n\n\n<div style=\"height:10px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<p class=\"wp-block-paragraph\">Hoy, m\u00e1s que hace un a\u00f1o, nos sentimos muy emocionados y queremos expresar nuestra inmensa gratitud a todos los que han participado en esta aventura. Vuestro apoyo es incre\u00edblemente importante.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Cada paso dado, cada esfuerzo realizado y cada v\u00ednculo creado han contribuido a reforzar la esperanza de un futuro m\u00e1s feliz para nuestros hijos.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Mientras recordamos estos logros, nuestro equipo sigue fiel a su compromiso. Es la celebraci\u00f3n de un a\u00f1o, pero tambi\u00e9n un recordatorio de que a\u00fan queda mucho por hacer. El viaje no termina aqu\u00ed, y todos estamos ilusionados con lo que nos espera.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Con la esperanza, la unidad y el progreso como principales motores, la asociaci\u00f3n \u00abLasst uns MDS heilen\u00bb sigue adelante.<\/p>","protected":false},"excerpt":{"rendered":"<p>Il y a exactement un an, l&rsquo;association \u00ab\u00a0Lasst uns MDS heilen &#8211; DupMECP2\u00a0\u00bb a vu le jour. L&rsquo;histoire de l&rsquo;association a commenc\u00e9 avec le diagnostic de Matteo en 2021. Apr\u00e8s [&hellip;]<\/p>","protected":false},"author":1,"featured_media":18349,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[7],"tags":[],"class_list":["post-18357","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>C\u00e9l\u00e9bration d&#039;une ann\u00e9e de progr\u00e8s : Le parcours et les accomplissements de l&#039;association - 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\/celebracion-de-un-ano-de-avances-la-trayectoria-y-los-logros-de-la-asociacion\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"C\u00e9l\u00e9bration d&#039;une ann\u00e9e de progr\u00e8s : Le parcours et les accomplissements de l&#039;association - DupMECP2\" \/>\n<meta property=\"og:description\" content=\"Il y a exactement un an, l&rsquo;association \u00ab\u00a0Lasst uns MDS heilen &#8211; DupMECP2\u00a0\u00bb a vu le jour. 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