{"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":"celebration-dune-annee-de-progres-le-parcours-et-les-accomplissements-de-lassociation","status":"publish","type":"post","link":"https:\/\/dupmecp2.eu\/de\/celebration-dune-annee-de-progres-le-parcours-et-les-accomplissements-de-lassociation\/","title":{"rendered":"C\u00e9l\u00e9bration d&rsquo;une ann\u00e9e de progr\u00e8s : Le parcours et les accomplissements de l&rsquo;association"},"content":{"rendered":"<p>Il y a exactement un an, l&rsquo;association \u00ab\u00a0Lasst uns MDS heilen &#8211; DupMECP2\u00a0\u00bb a vu le jour.<\/p>\n\n\n\n<p>L&rsquo;histoire de l&rsquo;association a commenc\u00e9 avec le diagnostic de Matteo en 2021. Apr\u00e8s trois ann\u00e9es d&rsquo;incertitude et de combat pour ses parents, David et Caroline Covini, le diagnostic du syndrome de duplication MECP2 est enfin pos\u00e9, r\u00e9v\u00e9lant une maladie rare dont seulement 260 cas sont recens\u00e9s dans le monde.<\/p>\n\n\n\n<p>Unis par l&rsquo;amour et la d\u00e9termination de faire une diff\u00e9rence pour les enfants atteints de MDS, David et Caroline, tous deux scientifiques, se sont lanc\u00e9s dans un voyage extraordinaire. Ce voyage a conduit \u00e0 la cr\u00e9ation de \u00ab\u00a0Lasst uns MDS heilen\u00a0\u00bb, une association d\u00e9di\u00e9e \u00e0 acc\u00e9l\u00e9rer la recherche, \u00e0 fournir un soutien et \u00e0 encourager l&rsquo;unit\u00e9 parmi les familles confront\u00e9es \u00e0 ce d\u00e9fi.<\/p>\n\n\n\n<p>En mai 2022, alors qu&rsquo;ils t\u00e9moignent du combat des parents face aux maladies rares et sensibilisent les m\u00e9dias \u00e0 MDS, les Covini croisent le chemin des familles Molnar et Curic, \u00e9galement touch\u00e9es par le syndrome de duplication du g\u00e8ne MECP2. Avec la forte motivation de contribuer aux actions pour leurs fils, ces 2 familles ont rejoint le conseil d&rsquo;administration de l&rsquo;association, formant ainsi une \u00e9quipe forte et d\u00e9termin\u00e9e.<\/p>\n\n\n\n<p>Cette date marque non seulement la cr\u00e9ation de l&rsquo;association, mais c\u00e9l\u00e8bre \u00e9galement les efforts incroyables r\u00e9alis\u00e9s dans la lutte contre le syndrome de duplication du g\u00e8ne MECP2. En un an seulement, des actions remarquables ont \u00e9t\u00e9 men\u00e9es \u00e0 bien :<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li><strong>Une \u00e9quipe solide et un soutien mondial :<\/strong> Le conseil d&rsquo;administration de l&rsquo;association, ainsi que des experts scientifiques, des membres de familles, des amis, ont rassembl\u00e9 plus de 130 membres provenant de plus de 10 pays. Ensemble, nous formons un r\u00e9seau mondial d\u00e9termin\u00e9 \u00e0 changer les choses.<\/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>Une plate-forme informative multilingue :<\/strong> L&rsquo;association a lanc\u00e9 <a href=\"https:\/\/dupmecp2.eu\/de\">www.dupmecp2.eu<\/a>, un site web offrant des informations en plusieurs langues sur le syndrome de duplication du g\u00e8ne MECP2. Cette plateforme sert \u00e0 rassembler les connaissances et \u00e0 partager les nouvelles informations pour soutenir les familles dans leur parcours.<\/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>\u00c9v\u00e9nements et collecte de fonds :<\/strong> La premi\u00e8re collecte de fonds en ligne et le premier \u00e9v\u00e9nement ont permis de sensibiliser le public et de montrer le pouvoir de la solidarit\u00e9. De g\u00e9n\u00e9reux dons ont \u00e9t\u00e9 re\u00e7us et un ambitieux projet de collecte de fonds massive est actuellement en cours de planification et devrait \u00eatre lanc\u00e9 \u00e0 l&rsquo;automne.<\/li>\n<\/ul>\n\n\n\n<div style=\"height:10px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<p>Aujourd&rsquo;hui, plus qu&rsquo;il y a un an, nous sommes remplis d&rsquo;\u00e9motion et nous tenons \u00e0 exprimer notre immense gratitude \u00e0 tous ceux qui ont particip\u00e9 \u00e0 cette aventure. Votre soutien est incroyablement important.<\/p>\n\n\n\n<p>Chaque \u00e9tape r\u00e9alis\u00e9e, chaque effort accompli et chaque lien tiss\u00e9 ont contribu\u00e9 \u00e0 renforcer l&rsquo;espoir d&rsquo;un avenir plus heureux pour nos enfants.<\/p>\n\n\n\n<p>Tout en repensant \u00e0 ces accomplissements, notre \u00e9quipe reste fid\u00e8le \u00e0 son engagement. C&rsquo;est la c\u00e9l\u00e9bration d&rsquo;une ann\u00e9e, mais c&rsquo;est aussi un rappel qu&rsquo;il y a encore beaucoup \u00e0 faire. Le voyage ne s&rsquo;arr\u00eate pas l\u00e0, et nous sommes tous excit\u00e9s par ce qui nous attend.<\/p>\n\n\n\n<p>Avec l&rsquo;espoir, l&rsquo;unit\u00e9 et le progr\u00e8s comme principaux moteurs, l&rsquo;association \u00ab\u00a0Lasst uns MDS heilen\u00a0\u00bb va de l&rsquo;avant.<\/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\/de\/celebration-dune-annee-de-progres-le-parcours-et-les-accomplissements-de-lassociation\/\" \/>\n<meta property=\"og:locale\" content=\"de_DE\" \/>\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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