{"id":33479,"date":"2025-09-04T10:45:04","date_gmt":"2025-09-04T08:45:04","guid":{"rendered":"https:\/\/dupmecp2.eu\/?p=33479"},"modified":"2025-09-10T12:55:39","modified_gmt":"2025-09-10T10:55:39","slug":"remeds-international-registry-sindrome-de-duplicacion-mecp2","status":"publish","type":"post","link":"https:\/\/dupmecp2.eu\/es\/remeds-international-registry-sindrome-de-duplicacion-mecp2\/","title":{"rendered":"REMEDS: Registro internacional de pacientes de REMEDS"},"content":{"rendered":"<p>\u00a1Ha llegado la hora! Invitamos a todas las familias del MDS a participar en&nbsp;<strong>REMEDS, LA PLATAFORMA DE REGISTRO E INVESTIGACI\u00d3N M\u00c9DICA PARA LAS PERSONAS AFECTADAS POR EL SINDROME DE DUPLICACI\u00d3N GEN\u00c9TICA MECP2<\/strong>&nbsp;(MDS) con sede en Europa.<\/p>\n\n\n\n<p><strong>REMEDS es una plataforma segura y multiling\u00fce en la que puede :<\/strong><\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li><strong>Reg\u00edstrese en&nbsp;<\/strong>su hijo o un familiar con SMD<\/li>\n\n\n\n<li><strong>Compartir informaci\u00f3n&nbsp;<\/strong>informaci\u00f3n valiosa sobre el s\u00edndrome que contribuye a la investigaci\u00f3n y a la mejora de la atenci\u00f3n y el tratamiento<\/li>\n\n\n\n<li><strong>Mantenerse al d\u00eda<\/strong>&nbsp;sobre nuevos estudios y encuestas en los que puede participar<\/li>\n<\/ul>\n\n\n\n<div style=\"height:38px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<div class=\"wp-block-buttons is-layout-flex wp-block-buttons-is-layout-flex\">\n<div class=\"wp-block-button\"><a class=\"wp-block-button__link has-white-color has-text-color has-background has-link-color wp-element-button\" href=\"https:\/\/remeds.org\/\" style=\"border-radius:11px;background-color:#f7a13f\"><strong>\u00bfListo para empezar?<\/strong><\/a><\/div>\n<\/div>\n\n\n\n<div style=\"height:38px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<p>Todos los datos son enteramente&nbsp;<strong>protegida y anonimizada<\/strong>&nbsp;- y usted conserva en todo momento el control sobre lo que comparte. REMEDS cumple las normas m\u00e1s estrictas de la&nbsp;<strong>RGPD&nbsp;<\/strong>y la seguridad de los datos m\u00e9dicos.<br><br>Se cre\u00f3 con la ayuda de m\u00e9dicos del Hospital Universitario Johannes Kepler de Austria, el asesoramiento de especialistas como el Dr. Davut Pehlivan y la Prof. Hilde Van Esch, y en respuesta a las necesidades expresadas por las familias. La plataforma fue posible gracias al apoyo de Ionis y validada por un abogado experto en protecci\u00f3n de datos.<br><br><strong>\u00bfPor qu\u00e9 afiliarse a REMEDS?<\/strong><br><strong>Porque tu historia importa.&nbsp;<\/strong>Cada contribuci\u00f3n ayuda a la investigaci\u00f3n para comprender mejor el s\u00edndrome, evaluar las v\u00edas de atenci\u00f3n, trabajar en mejores tratamientos y servicios de apoyo y comprender la distribuci\u00f3n geogr\u00e1fica de las familias en todo el mundo.<\/p>\n\n\n\n<div style=\"height:38px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<figure class=\"wp-block-embed is-type-video is-provider-youtube wp-block-embed-youtube wp-embed-aspect-16-9 wp-has-aspect-ratio\"><div class=\"wp-block-embed__wrapper\">\n<iframe title=\"REMEDS REgister y MEDical Survey Platform para el s\u00edndrome de duplicaci\u00f3n MECP2\" width=\"800\" height=\"450\" data-src=\"https:\/\/www.youtube.com\/embed\/8Q4Yizjlm6w?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" allowfullscreen src=\"data:image\/svg+xml;base64,PHN2ZyB3aWR0aD0iMSIgaGVpZ2h0PSIxIiB4bWxucz0iaHR0cDovL3d3dy53My5vcmcvMjAwMC9zdmciPjwvc3ZnPg==\" class=\"lazyload\" data-load-mode=\"1\"><\/iframe>\n<\/div><\/figure>\n\n\n\n<p><strong>Registro - C\u00f3mo funciona<\/strong><br>Para afiliarse a REMEDS, siga los pasos que se indican a continuaci\u00f3n:<br>1) Cree una cuenta de usuario en REMEDS.org - el registro es seguro a trav\u00e9s de su direcci\u00f3n de correo electr\u00f3nico.<br>2) Inscriba a su hijo aportando informaci\u00f3n m\u00e9dica y una prueba de diagn\u00f3stico (por ejemplo, un informe de pruebas gen\u00e9ticas o un certificado m\u00e9dico).<br>3) Tras la revisi\u00f3n y aprobaci\u00f3n por parte del equipo m\u00e9dico de REMEDS, podr\u00e1 gestionar los datos de su hijo y participar en las encuestas en curso.<\/p>\n\n\n\n<p><strong>Si tiene alguna pregunta o necesita ayuda, no dude en ponerse en contacto con nosotros en office@remeds.org. Estaremos encantados de ayudarle en todo momento.<\/strong><\/p>\n\n\n\n<div style=\"height:38px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<div class=\"wp-block-buttons is-layout-flex wp-block-buttons-is-layout-flex\">\n<div class=\"wp-block-button\"><a class=\"wp-block-button__link has-white-color has-text-color has-background has-link-color wp-element-button\" href=\"https:\/\/remeds.org\/\" style=\"border-radius:11px;background-color:#f7a13f\">Reg\u00edstrese aqu\u00ed<\/a><\/div>\n<\/div>\n\n\n\n<div style=\"height:38px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<p><\/p>","protected":false},"excerpt":{"rendered":"<p>\u00a1Ha llegado el momento! Invitamos a todas las familias MDS a unirse a REMEDS, la plataforma de REgistro e INVESTIGACI\u00d3N M\u00c9DICA para personas con s\u00edndrome de duplicaci\u00f3n [...].<\/p>","protected":false},"author":1,"featured_media":33480,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[7],"tags":[],"class_list":["post-33479","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>REMEDS: Le registre international pour les patients atteints du syndrome - DupMECP2<\/title>\n<meta name=\"description\" content=\"REMEDS est un espace o\u00f9 les familles peuvent partager leurs exp\u00e9riences et contribuer directement \u00e0 faire avancer la recherche et les soins. Chaque inscription est un cadeau pour toute la communaut\u00e9, aidant les scientifiques, les m\u00e9decins et les familles \u00e0 se r\u00e9unir pour construire un avenir meilleur.\" \/>\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\/remeds-international-registry-sindrome-de-duplicacion-mecp2\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"REMEDS: Le registre international pour les patients atteints du syndrome - DupMECP2\" \/>\n<meta property=\"og:description\" content=\"REMEDS est un espace o\u00f9 les familles peuvent partager leurs exp\u00e9riences et contribuer directement \u00e0 faire avancer la recherche et les soins. 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