{"id":33590,"date":"2026-07-08T12:29:16","date_gmt":"2026-07-08T10:29:16","guid":{"rendered":"https:\/\/dupmecp2.eu\/?p=33590"},"modified":"2026-07-09T10:03:42","modified_gmt":"2026-07-09T08:03:42","slug":"le-fonds-de-soutien-aux-familles-est-desormais-ouvert","status":"publish","type":"post","link":"https:\/\/dupmecp2.eu\/el\/le-fonds-de-soutien-aux-familles-est-desormais-ouvert\/","title":{"rendered":"Le Fonds de soutien aux familles est d\u00e9sormais ouvert"},"content":{"rendered":"<p class=\"wp-block-paragraph\">Nous savons que s\u2019occuper d\u2019un enfant atteint du syndrome de duplication du g\u00e8ne MECP2 implique souvent bien plus que de simples difficult\u00e9s \u00e9motionnelles.<br>Cela entra\u00eene \u00e9galement des contraintes pratiques et financi\u00e8res : th\u00e9rapies, mat\u00e9riel, traitements et aides qui ne sont pas toujours pris en charge.<br><strong>Aujourd\u2019hui, nous sommes heureux de vous annoncer que le fonds de soutien aux familles DupMECP2 est d\u00e9sormais lanc\u00e9 &#x1f49b;<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Ce fonds a \u00e9t\u00e9 cr\u00e9\u00e9 pour apporter une aide concr\u00e8te et pratique aux familles qui font face \u00e0 ces difficult\u00e9s au quotidien.<br>Notre objectif est simple : all\u00e9ger une partie de leur charge afin qu\u2019elles puissent se concentrer sur ce qui compte le plus : leur enfant.<br>Le fonds peut prendre en charge des d\u00e9penses telles que :<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Les th\u00e9rapies et les traitements m\u00e9dicaux<\/li>\n\n\n\n<li>Le mat\u00e9riel m\u00e9dical indispensable<\/li>\n\n\n\n<li>Les frais de d\u00e9placement li\u00e9s aux soins<\/li>\n\n\n\n<li>Le soutien psychologique aux familles<br><\/li>\n<\/ul>\n\n\n\n<div style=\"height:50px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Qui peut postuler ?<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Dans le cadre de notre projet pilote initial, cette premi\u00e8re phase du programme s&rsquo;adresse aux familles r\u00e9sidant en Europe ou dans l&rsquo;EEE.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">\u2192 Les familles r\u00e9sidant aux \u00c9tats-Unis peuvent b\u00e9n\u00e9ficier d&rsquo;un programme d&rsquo;accompagnement d\u00e9di\u00e9 par l&rsquo;interm\u00e9diaire de la MECP2 Duplication Foundation.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">\u2192 Les familles du reste du monde sont chaleureusement invit\u00e9es \u00e0 manifester leur int\u00e9r\u00eat, afin que nous puissions mieux cerner leurs besoins et \u00e9tendre notre action \u00e0 l&rsquo;\u00e9chelle mondiale \u00e0 l&rsquo;avenir.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Avant de postuler<\/strong><br>Pour \u00eatre \u00e9ligible, votre enfant doit \u00eatre inscrit au registre REMEDS.<br>REMEDS est notre plateforme mondiale qui contribue \u00e0 mieux comprendre le syndrome de duplication du g\u00e8ne MECP2 et \u00e0 faire avancer la recherche.<br>En y participant, vous contribuez \u00e0 un avenir meilleur pour l\u2019ensemble de la communaut\u00e9.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Comment postuler<\/strong>?<br>La proc\u00e9dure est simple et commence par REMEDS :<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Rendez-vous sur <a href=\"https:\/\/remeds.org\/\">remeds.org <\/a>et connectez-vous \u00e0 votre compte (ou cr\u00e9ez-en un)<\/li>\n\n\n\n<li>Inscrivez votre enfant dans le registre REMEDS<\/li>\n\n\n\n<li>Rendez-vous dans la rubrique \u00ab Soutien aux familles \u00bb et remplissez le formulaire de demande<\/li>\n\n\n\n<li>Envoyez les documents requis (devis) par e-mail \u00e0 office@dupmecp2.eu<\/li>\n<\/ul>\n\n\n\n<div style=\"height:35px\" 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:\/\/dupmecp2.eu\/wp-content\/uploads\/2026\/07\/Family-Support-Guidelines-v1.0.pdf\" style=\"border-radius:11px;background-color:#f7a13f\" target=\"_blank\" rel=\"noreferrer noopener\">Consultez le r\u00e8glement complet ici<\/a><\/div>\n<\/div>\n\n\n\n<div style=\"height:48px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<p class=\"wp-block-paragraph\">Nous savons qu\u2019il n\u2019est pas toujours facile de demander de l\u2019aide.<br>Mais n\u2019oubliez pas : vous n\u2019\u00eates pas seul(e) dans cette \u00e9preuve.<br>Ce fonds existe gr\u00e2ce \u00e0 un engagement commun :<br>les familles qui s\u2019entraident, ensemble.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Ce fonds existe gr\u00e2ce \u00e0 la confiance et au soutien de nos partenaires.<br>Nous remercions chaleureusement Boehringer Ingelheim, Octapharma et Ionis de nous avoir aid\u00e9s \u00e0 transformer cette initiative en un v\u00e9ritable soutien pour les familles.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Si vous souhaitez vous associer \u00e0 cette d\u00e9marche et nous aider \u00e0 venir en aide \u00e0 davantage de familles, vous trouverez ci-dessous plus d&rsquo;informations sur la mani\u00e8re de soutenir ce fonds.<\/p>\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:\/\/dupmecp2.eu\/el\/%cf%85%cf%80%ce%bf%cf%83%cf%84%ce%ae%cf%81%ce%b9%ce%be%ce%b7-%ce%b4%cf%8e%cf%83%cf%84%ce%b5\/\" style=\"border-radius:11px;background-color:#f7a13f\">Supporter les familles<\/a><\/div>\n<\/div>\n\n\n\n<p class=\"wp-block-paragraph\"><\/p>","protected":false},"excerpt":{"rendered":"<p>Nous savons que s\u2019occuper d\u2019un enfant atteint du syndrome de duplication du g\u00e8ne MECP2 implique souvent bien plus que de simples difficult\u00e9s \u00e9motionnelles.Cela entra\u00eene \u00e9galement des contraintes pratiques et financi\u00e8res [&hellip;]<\/p>","protected":false},"author":1,"featured_media":33591,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[218],"tags":[],"class_list":["post-33590","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-dupmecp2-fr"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v25.8 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>Le Fonds de soutien aux familles est d\u00e9sormais ouvert - 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\/el\/le-fonds-de-soutien-aux-familles-est-desormais-ouvert\/\" \/>\n<meta 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