{"id":32537,"date":"2025-02-17T17:03:30","date_gmt":"2025-02-17T16:03:30","guid":{"rendered":"https:\/\/dupmecp2.eu\/?p=32537"},"modified":"2025-02-17T17:06:48","modified_gmt":"2025-02-17T16:06:48","slug":"ambiciones-2025","status":"publish","type":"post","link":"https:\/\/dupmecp2.eu\/es\/ambiciones-2025\/","title":{"rendered":"Nuestras ambiciones para 2025"},"content":{"rendered":"<p>En 2024, la comunidad del s\u00edndrome de duplicaci\u00f3n MECP2 ha sido testigo de hitos notables en la carrera por una cura con el lanzamiento no de uno, sino de dos ensayos cl\u00ednicos. Adem\u00e1s de estos importantes avances, estamos orgullosos de los progresos que hemos realizado para apoyar a las familias. Como ejemplos clave de nuestros esfuerzos en 2024, nos gustar\u00eda destacar especialmente:&nbsp;<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>El desarrollo de REMEDS, nuestra plataforma de registro-encuesta en l\u00ednea para el s\u00edndrome de duplicaci\u00f3n MECP2 con sede en Europa. Este recurso vital ha sido objeto de un intenso trabajo a lo largo de 2024 y su lanzamiento est\u00e1 previsto para mediados de 2025, allanando el camino para una mejor recopilaci\u00f3n de datos y comprensi\u00f3n del s\u00edndrome.&nbsp;<\/li>\n<\/ul>\n\n\n\n<ul class=\"wp-block-list\">\n<li>La producci\u00f3n de dos seminarios web y un libro electr\u00f3nico para ayudar a las familias a comprender mejor el estudio ATTUNE y sus implicaciones.&nbsp;<\/li>\n<\/ul>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Numerosos actos ben\u00e9ficos en Austria para concienciar sobre el s\u00edndrome de duplicaci\u00f3n MECP2.&nbsp;<\/li>\n<\/ul>\n\n\n\n<ul class=\"wp-block-list\">\n<li>La aprobaci\u00f3n del Ministerio de Hacienda austriaco, que permite que las donaciones que se nos hagan a partir del 1 de enero de 2024 sean finalmente deducibles de impuestos.&nbsp;<\/li>\n<\/ul>\n\n\n\n<div style=\"height:20px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<p>2024 fue un a\u00f1o muy emocionante para nuestra comunidad y nuestra organizaci\u00f3n. Sin embargo, reconocemos que nuestro viaje dista mucho de haber terminado...&nbsp;<\/p>\n\n\n\n<p>Su apoyo desde nuestra creaci\u00f3n en el verano de 2022 ha sido realmente incre\u00edble y nos da la confianza para continuar. Gracias a vosotros, seguimos defendiendo, financiando la investigaci\u00f3n y ofreciendo apoyo a las familias que viven con el s\u00edndrome de duplicaci\u00f3n MECP2.&nbsp;<\/p>\n\n\n\n<div style=\"height:20px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<p>De cara a 2025, nos comprometemos a:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Establecer puentes entre la investigaci\u00f3n acad\u00e9mica y las empresas farmac\u00e9uticas para acelerar el desarrollo terap\u00e9utico y mejorar las herramientas de diagn\u00f3stico.&nbsp;<\/li>\n<\/ul>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Impulsar la realizaci\u00f3n de ensayos cl\u00ednicos significativos, por ejemplo, colaborando con empresas farmac\u00e9uticas y autoridades sanitarias como la FDA o la EMA.&nbsp;<\/li>\n<\/ul>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Proporcionar apoyo financiero a las familias para ayudarles a acceder a dispositivos m\u00e9dicos esenciales y terapias adaptadas a sus necesidades \u00fanicas.&nbsp;<\/li>\n<\/ul>\n\n\n\n<div style=\"height:20px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<p><strong>Nuestro trabajo no ser\u00eda posible sin su continuo apoyo. Gracias por formar parte de nuestro viaje.&nbsp;<\/strong><\/p>","protected":false},"excerpt":{"rendered":"<p>In 2024, the MECP2 Duplication Syndrome community has witnessed remarkable milestones in the race for a cure with the launch of not one, but two clinical trials. 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