{"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-nouveau-chapitre-mdg","status":"publish","type":"post","link":"https:\/\/dupmecp2.eu\/es\/un-nouveau-chapitre-mdg\/","title":{"rendered":"Un nouveau chapitre pour la communaut\u00e9 du syndrome de duplication du g\u00e8ne MECP2 : d\u00e9couvrez MDG"},"content":{"rendered":"<p class=\"wp-block-paragraph\">Aujourd\u2019hui, nous sommes fiers de partager avec vous un projet qui se construit depuis plusieurs mois.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>MECP2 Duplication Global (MDG) est officiellement lanc\u00e9.<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph translation-block\">Tout au long du mois de juillet, \u00e0 l\u2019occasion du Mois de sensibilisation au syndrome de duplication du g\u00e8ne MECP2, des voix venues du monde entier se sont r\u00e9unies autour d\u2019un message simple : <strong>\u00ab Nous sommes MDG. \u00bb<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">DupMECP2 est fier d&rsquo;\u00eatre l&rsquo;un des membres fondateurs de MECP2 Duplication Global (MDG), une nouvelle alliance internationale r\u00e9unissant des organisations engag\u00e9es pour les personnes vivant avec le syndrome de duplication du g\u00e8ne MECP2.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Aujourd&rsquo;hui, cette voix devient une r\u00e9alit\u00e9.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Pourquoi MDG ?<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Le syndrome de duplication du g\u00e8ne MECP2 est une maladie qui concerne des familles partout dans le monde. Quel que soit leur pays, les familles font face \u00e0 des d\u00e9fis similaires : r\u00e9pondre \u00e0 des besoins m\u00e9dicaux complexes, trouver des informations fiables, d\u00e9fendre l\u2019acc\u00e8s \u00e0 des soins adapt\u00e9s et garder espoir pour de futurs traitements.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Depuis de nombreuses ann\u00e9es, des organisations de patients \u00e0 travers le monde travaillent sans rel\u00e2che pour soutenir les familles, sensibiliser le public et acc\u00e9l\u00e9rer la recherche. Chaque organisation poss\u00e8de sa propre histoire, sa communaut\u00e9 et ses forces, mais toutes partagent le m\u00eame objectif : am\u00e9liorer la vie des personnes vivant avec le syndrome de duplication du g\u00e8ne MECP2.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">MDG est n\u00e9 de la conviction que nous pouvons accomplir davantage ensemble que chacun de notre c\u00f4t\u00e9.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Comme nous l\u2019avons montr\u00e9 tout au long de la campagne de juillet, notre communaut\u00e9 d\u00e9passe les oc\u00e9ans, les langues et les fronti\u00e8res. En travaillant ensemble, notre voix collective devient plus forte.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Qu\u2019est-ce que MECP2 Duplication Global ?<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">MECP2 Duplication Global (MDG) est une alliance d\u2019organisations \u00e0 but non lucratif engag\u00e9es dans la d\u00e9fense des personnes touch\u00e9es par le syndrome de duplication du g\u00e8ne MECP2.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">En unissant nos forces, nous souhaitons renforcer la collaboration internationale et coordonner nos actions dans les domaines de la sensibilisation, de la recherche, du soutien aux familles et des soins cliniques.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Ensemble, MDG a pour ambition de :<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Acc\u00e9l\u00e9rer le d\u00e9veloppement de nouvelles options th\u00e9rapeutiques en soutenant et en reliant les efforts de recherche \u00e0 l\u2019\u00e9chelle mondiale.<\/li>\n\n\n\n<li>Favoriser les progr\u00e8s dans la prise en charge clinique et am\u00e9liorer le partage des connaissances entre les pays.<\/li>\n\n\n\n<li>Soutenir les familles partout dans le monde en renfor\u00e7ant la collaboration entre les organisations de patients et les communaut\u00e9s concern\u00e9es.<\/li>\n\n\n\n<li>Sensibiliser au syndrome de duplication du g\u00e8ne MECP2 \u00e0 l\u2019\u00e9chelle internationale.<\/li>\n<\/ul>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Pourquoi un lancement le 28 juillet ?<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Cette date n\u2019a pas \u00e9t\u00e9 choisie au hasard.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">MDG est officiellement lanc\u00e9 le 28 juillet, en r\u00e9f\u00e9rence \u00e0 la r\u00e9gion chromosomique Xq28, situ\u00e9e sur le chromosome X, o\u00f9 se trouve g\u00e9n\u00e9ralement le g\u00e8ne MECP2.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Pour une communaut\u00e9 unie autour d\u2019un m\u00eame diagnostic g\u00e9n\u00e9tique, cette date symbolise \u00e0 la fois notre origine commune et notre avenir partag\u00e9.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Ce que cela signifie pour les familles<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Pour les familles touch\u00e9es par le syndrome de duplication du g\u00e8ne MECP2, MDG repr\u00e9sente quelque chose de simple mais puissant: <strong>ensemble nous sommes plus forts.<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Que vous viviez en Europe, en Am\u00e9rique du Nord, en Asie ou ailleurs, vous faites partie d\u2019une communaut\u00e9 internationale en pleine croissance qui travaille ensemble vers les m\u00eames objectifs.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Tout au long de la campagne de juillet, un message est revenu encore et encore : chaque famille a son histoire, mais ensemble, nos voix n\u2019en forment qu\u2019une seule.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">MDG est construit sur cette id\u00e9e.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">En r\u00e9unissant les organisations, nous pouvons partager nos ressources, apprendre les uns des autres, amplifier nos actions de sensibilisation et offrir aux familles l\u2019acc\u00e8s \u00e0 un r\u00e9seau mondial plus fort et mieux connect\u00e9.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Et maintenant ?<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Le lancement de MDG ne marque pas la fin d\u2019un parcours. Il marque le d\u00e9but d\u2019un nouveau chapitre.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Il reste encore beaucoup \u00e0 accomplir. La recherche doit continuer. L\u2019acc\u00e8s aux soins doit progresser. Les familles ont besoin de soutien, d\u2019informations et d\u2019espoir.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Mais le progr\u00e8s na\u00eet lorsque les personnes se rassemblent. <strong>Parce que lorsque nous unissons nos voix, nous devenons plus forts.<\/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\">Rendez-vous sur le site de MDG <a href=\"https:\/\/wearemecp2dup.org\/\">www.wearemecp2dupglobal.org<\/a> pour d\u00e9couvrir les autres organisations qui composent l\u2019alliance, explorer les initiatives \u00e0 venir et d\u00e9couvrir comment vous pouvez soutenir les efforts mondiaux en faveur du syndrome de duplication du g\u00e8ne MECP2.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Une seule voix. Un mouvement mondial. Nous sommes 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-nouveau-chapitre-mdg\/\" \/>\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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