{"id":558,"date":"2026-04-21T16:18:19","date_gmt":"2026-04-21T14:18:19","guid":{"rendered":"https:\/\/afs-costello-cfc.asso.fr\/?p=558"},"modified":"2026-04-21T19:23:44","modified_gmt":"2026-04-21T17:23:44","slug":"publication-du-compte-rendu-de-lassemblee-generale-2025","status":"publish","type":"post","link":"https:\/\/afs-costello-cfc.asso.fr\/index.php\/2026\/04\/21\/publication-du-compte-rendu-de-lassemblee-generale-2025\/","title":{"rendered":"Publication du Compte-Rendu de l&rsquo;Assembl\u00e9e G\u00e9n\u00e9rale 2025"},"content":{"rendered":"\n<h2 class=\"wp-block-heading\">\ud83d\udcdd D\u00e9couvrez le Compte-Rendu de l&rsquo;Assembl\u00e9e G\u00e9n\u00e9rale 2025, effectu\u00e9 le 07\/02\/2026 \u00e0 Paris (Robert Debr\u00e9).<\/h2>\n\n\n\n<p><\/p>\n\n\n\n<p>L\u2019Assembl\u00e9e G\u00e9n\u00e9rale 2025 de l\u2019Association Fran\u00e7aise des Syndromes Costello &amp; Cardio-Facio-Cutan\u00e9 s\u2019est tenue le 7 f\u00e9vrier 2026 \u00e0 l\u2019h\u00f4pital Robert-Debr\u00e9, avec une participation en pr\u00e9sentiel et \u00e0 distance. Ce rendez-vous annuel a permis de revenir sur les actions men\u00e9es en 2025, de partager les perspectives pour 2026 et de renouveler les instances de gouvernance.<\/p>\n\n\n\n<p><\/p>\n\n\n\n<h3 class=\"wp-block-heading\"><br><br><strong>Forte de ses 25 ann\u00e9es d\u2019engagement, l\u2019association poursuit sa mission essentielle<\/strong><\/h3>\n\n\n\n<p>L\u2019association poursuit sa mission essentielle : accompagner les familles, soutenir la recherche et favoriser le partage d\u2019informations autour de ces maladies rares. En 2025, plusieurs projets structurants ont \u00e9t\u00e9 men\u00e9s, notamment la participation \u00e0 des programmes de recherche europ\u00e9ens, le d\u00e9veloppement d\u2019outils pour am\u00e9liorer la prise en charge m\u00e9dicale, ainsi que l\u2019organisation d\u2019\u00e9v\u00e9nements f\u00e9d\u00e9rateurs comme le rassemblement annuel r\u00e9unissant familles et professionnels de sant\u00e9.<\/p>\n\n\n\n<div style=\"height:30px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<blockquote class=\"wp-block-quote is-layout-flow wp-block-quote-is-layout-flow\">\n<p style=\"font-size:25px\"><strong><mark style=\"background-color:rgba(0, 0, 0, 0)\" class=\"has-inline-color has-accent-color\">L\u2019association compte aujourd\u2019hui pr\u00e8s de 900 personnes r\u00e9f\u00e9renc\u00e9es et 137 familles identifi\u00e9es, t\u00e9moignant de son r\u00f4le central dans la mise en r\u00e9seau et le soutien des personnes concern\u00e9es.<\/mark><\/strong><\/p>\n<\/blockquote>\n\n\n\n<h3 class=\"wp-block-heading\"><br><strong>Une baisse des adh\u00e9sions en 2025<\/strong><\/h3>\n\n\n\n<p><strong>Malgr\u00e9 une baisse des adh\u00e9sions en 2025<\/strong>, les membres restent pleinement mobilis\u00e9s pour renforcer la visibilit\u00e9 de l\u2019association et <strong>d\u00e9velopper de nouvelles actions en 2026<\/strong>, avec un objectif clair : continuer \u00e0 am\u00e9liorer la qualit\u00e9 de vie des personnes atteintes et de leurs proches, tout au long de leur parcours de vie.<\/p>\n\n\n\n<h4 class=\"wp-block-heading\"><br>\ud83d\udcce <strong>T\u00e9l\u00e9charger le Compte-Rendu<\/strong><\/h4>\n\n\n\n<div style=\"height:30px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<div class=\"wp-block-buttons is-content-justification-center is-layout-flex wp-container-core-buttons-is-layout-a89b3969 wp-block-buttons-is-layout-flex\">\n<div class=\"wp-block-button\"><a class=\"wp-block-button__link has-white-color has-accent-background-color has-text-color has-background has-link-color has-custom-font-size wp-element-button\" href=\"http:\/\/afs-costello-cfc.asso.fr\/wp-content\/uploads\/2026\/04\/AFSC-CFC-AG-2025-Compte-Rendu.pdf\" style=\"font-size:16px\" target=\"_blank\" rel=\"noreferrer noopener\"><strong>T\u00e9l\u00e9charger le Compte-Rendu<\/strong> <strong>2025<\/strong><\/a><\/div>\n<\/div>\n\n\n\n<div style=\"height:50px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity is-style-wide\"\/>\n\n\n\n<div style=\"height:15px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<h4 class=\"wp-block-heading\">\ud83d\udd0e <strong>Consulter le Compte-Rendu<\/strong><\/h4>\n\n\n\n<div style=\"height:15px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<div data-wp-interactive=\"core\/file\" class=\"wp-block-file has-link-color wp-elements-1fed9b62a7b081dcfe44bab8183075dd\" style=\"border-top-left-radius:0px;border-top-right-radius:0px;border-bottom-left-radius:0px;border-bottom-right-radius:0px\"><object data-wp-bind--hidden=\"!state.hasPdfPreview\" hidden class=\"wp-block-file__embed\" data=\"https:\/\/afs-costello-cfc.asso.fr\/wp-content\/uploads\/2026\/04\/AFSC-CFC-AG-2025-Compte-Rendu.pdf\" type=\"application\/pdf\" style=\"width:100%;height:600px\" aria-label=\"Contenu embarqu\u00e9 &lt;strong&gt;AFSC-CFC AG-2025 Compte-Rendu&lt;\/strong&gt;.\"><\/object><a id=\"wp-block-file--media-9f286624-d6e0-4f3a-8428-bb302f7ba76f\" href=\"https:\/\/afs-costello-cfc.asso.fr\/wp-content\/uploads\/2026\/04\/AFSC-CFC-AG-2025-Compte-Rendu.pdf\" target=\"_blank\" rel=\"noreferrer noopener\"><strong>AFSC-CFC AG-2025 Compte-Rendu<\/strong><\/a><a href=\"https:\/\/afs-costello-cfc.asso.fr\/wp-content\/uploads\/2026\/04\/AFSC-CFC-AG-2025-Compte-Rendu.pdf\" class=\"wp-block-file__button wp-element-button\" download aria-describedby=\"wp-block-file--media-9f286624-d6e0-4f3a-8428-bb302f7ba76f\"><strong>T\u00e9l\u00e9charger<\/strong><\/a><\/div>\n\n\n\n<div style=\"height:50px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<p>\u2794  <strong>Consulter nos autres articles<\/strong><\/p>\n\n\n\n<div class=\"wp-block-columns is-layout-flex wp-container-core-columns-is-layout-28f84493 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\"><\/div>\n\n\n\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\"><\/div>\n\n\n\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\"><\/div>\n<\/div>\n\n\n\n<p><\/p>\n","protected":false},"excerpt":{"rendered":"<p>\ud83d\udcdd D\u00e9couvrez le Compte-Rendu de l&rsquo;Assembl\u00e9e G\u00e9n\u00e9rale 2025, effectu\u00e9 le 07\/02\/2026 \u00e0 Paris (Robert Debr\u00e9). L\u2019Assembl\u00e9e G\u00e9n\u00e9rale 2025 de l\u2019Association Fran\u00e7aise des Syndromes Costello &amp; Cardio-Facio-Cutan\u00e9 s\u2019est tenue le 7 f\u00e9vrier 2026 \u00e0 l\u2019h\u00f4pital Robert-Debr\u00e9, avec une participation en pr\u00e9sentiel et \u00e0 distance. Ce rendez-vous annuel a permis de revenir [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":582,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_themeisle_gutenberg_block_has_review":false,"footnotes":""},"categories":[4],"tags":[],"class_list":["post-558","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-general"],"_links":{"self":[{"href":"https:\/\/afs-costello-cfc.asso.fr\/index.php\/wp-json\/wp\/v2\/posts\/558","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/afs-costello-cfc.asso.fr\/index.php\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/afs-costello-cfc.asso.fr\/index.php\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/afs-costello-cfc.asso.fr\/index.php\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/afs-costello-cfc.asso.fr\/index.php\/wp-json\/wp\/v2\/comments?post=558"}],"version-history":[{"count":30,"href":"https:\/\/afs-costello-cfc.asso.fr\/index.php\/wp-json\/wp\/v2\/posts\/558\/revisions"}],"predecessor-version":[{"id":628,"href":"https:\/\/afs-costello-cfc.asso.fr\/index.php\/wp-json\/wp\/v2\/posts\/558\/revisions\/628"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/afs-costello-cfc.asso.fr\/index.php\/wp-json\/wp\/v2\/media\/582"}],"wp:attachment":[{"href":"https:\/\/afs-costello-cfc.asso.fr\/index.php\/wp-json\/wp\/v2\/media?parent=558"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/afs-costello-cfc.asso.fr\/index.php\/wp-json\/wp\/v2\/categories?post=558"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/afs-costello-cfc.asso.fr\/index.php\/wp-json\/wp\/v2\/tags?post=558"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}