{"id":1,"date":"2026-07-24T17:57:07","date_gmt":"2026-07-24T17:57:07","guid":{"rendered":"http:\/\/www.syndromedemalan.fr\/?p=1"},"modified":"2026-09-13T14:13:25","modified_gmt":"2026-09-13T14:13:25","slug":"congres1","status":"publish","type":"post","link":"https:\/\/www.syndromedemalan.fr\/index.php\/2026\/07\/24\/congres1\/","title":{"rendered":"Congres Syndrome de Malan 2025 : un congr\u00e8s, un d\u00e9clic et la naissance d&rsquo;une association."},"content":{"rendered":"<p>[et_pb_section fb_built=\u00a0\u00bb1&Prime; admin_label=\u00a0\u00bbsection\u00a0\u00bb _builder_version=\u00a0\u00bb4.16&Prime; background_color=\u00a0\u00bb#F2CB4B\u00a0\u00bb use_background_color_gradient=\u00a0\u00bbon\u00a0\u00bb background_color_gradient_stops=\u00a0\u00bb#ffffff 0%|#fdffa3 100%\u00a0\u00bb background_color_gradient_start=\u00a0\u00bb#ffffff\u00a0\u00bb background_color_gradient_end=\u00a0\u00bb#fdffa3&Prime; custom_margin=\u00a0\u00bb||-65px|||\u00a0\u00bb custom_padding=\u00a0\u00bb1px||2px|||\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_row column_structure=\u00a0\u00bb2_5,3_5&Prime; admin_label=\u00a0\u00bbrow\u00a0\u00bb _builder_version=\u00a0\u00bb4.16&Prime; background_size=\u00a0\u00bbinitial\u00a0\u00bb background_position=\u00a0\u00bbtop_left\u00a0\u00bb background_repeat=\u00a0\u00bbrepeat\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_column type=\u00a0\u00bb2_5&Prime; _builder_version=\u00a0\u00bb4.16&Prime; custom_padding=\u00a0\u00bb|||\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb custom_padding__hover=\u00a0\u00bb|||\u00a0\u00bb][et_pb_image src=\u00a0\u00bbhttp:\/\/www.syndromedemalan.fr\/wp-content\/uploads\/2026\/07\/congres2024.jpg\u00a0\u00bb title_text=\u00a0\u00bbcongres2024&Prime; _builder_version=\u00a0\u00bb4.27.8&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb hover_enabled=\u00a0\u00bb0&Prime; border_radii=\u00a0\u00bbon|20px|20px|20px|20px\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb sticky_enabled=\u00a0\u00bb0&Prime;][\/et_pb_image][\/et_pb_column][et_pb_column type=\u00a0\u00bb3_5&Prime; _builder_version=\u00a0\u00bb4.16&Prime; custom_padding=\u00a0\u00bb|||\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb custom_padding__hover=\u00a0\u00bb|||\u00a0\u00bb][et_pb_text admin_label=\u00a0\u00bbText\u00a0\u00bb _builder_version=\u00a0\u00bb4.16&Prime; text_text_color=\u00a0\u00bb#3A3A2A\u00a0\u00bb link_font=\u00a0\u00bb|700|||||||\u00a0\u00bb link_text_color=\u00a0\u00bb#EF823F\u00a0\u00bb background_size=\u00a0\u00bbinitial\u00a0\u00bb background_position=\u00a0\u00bbtop_left\u00a0\u00bb background_repeat=\u00a0\u00bbrepeat\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb]<\/p>\n<p>C\u2019est par l\u2019interm\u00e9diaire de la <strong>Malan Syndrome Foundation<\/strong> que nous avons \u00e9t\u00e9 inform\u00e9s que l\u2019association espagnole, cr\u00e9\u00e9e en 2023, organisait son <a href=\"https:\/\/sindromedemalan.org\/congreso-internacional-sindrome-de-malan-espana-2025\/\" target=\"_blank\" rel=\"noopener\" title=\"Congres Syndrome de Malan 2025\">1er congr\u00e8s international \u00e0 Madrid<\/a> en mars 2025, un \u00e9v\u00e9nement ouvert aux familles des pays frontaliers. Parlant la langue, j&rsquo;ai vu l\u00e0 une opportunit\u00e9 unique.<\/p>\n<p><strong>Ce congr\u00e8s a \u00e9t\u00e9 un tournant.<\/strong> Il m&rsquo;a permis d&rsquo;en apprendre davantage sur le syndrome, d&rsquo;assister aux avanc\u00e9es scientifiques, mais surtout d&rsquo;\u00e9changer avec d&rsquo;autres parents et de rencontrer, pour la premi\u00e8re fois, d&rsquo;autres enfants porteurs du syndrome. \u00c0 la fin de ce colloque intense et riche en \u00e9motions, une id\u00e9e est devenue une \u00e9vidence :<strong> cr\u00e9er une association en France pour offrir ce m\u00eame soutien aux familles francophones.<\/strong><\/p>\n<p>L&rsquo;histoire s&rsquo;est ensuite acc\u00e9l\u00e9r\u00e9e gr\u00e2ce \u00e0 la rencontre de deux autres mamans, C\u00e9cile et Anne-Astrid. Anim\u00e9es par le m\u00eame d\u00e9sir de faire bouger les lignes et d&rsquo;accompagner les familles en France, nous avons imm\u00e9diatement uni nos forces et notre \u00e9nergie autour de ce projet commun.<\/p>\n<p><strong>C&rsquo;est ainsi qu&rsquo;en d\u00e9cembre 2025, l\u2019association fran\u00e7aise du Syndrome de Malan a officiellement vu le jour.<\/strong><\/p>\n<p>Val\u00e9rie<\/p>\n<p>[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row _builder_version=\u00a0\u00bb4.16&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb custom_padding=\u00a0\u00bb6px|||||\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_column type=\u00a0\u00bb4_4&Prime; _builder_version=\u00a0\u00bb4.16&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][dsm_blog_carousel include_categories=\u00a0\u00bb9&Prime; use_excerpt=\u00a0\u00bboff\u00a0\u00bb use_date=\u00a0\u00bboff\u00a0\u00bb use_author=\u00a0\u00bboff\u00a0\u00bb mousewheel=\u00a0\u00bbon\u00a0\u00bb pause_on_hover=\u00a0\u00bbon\u00a0\u00bb pagi_active_color=\u00a0\u00bb#EF823F\u00a0\u00bb left_navi_position=\u00a0\u00bb-42px\u00a0\u00bb right_navi_position=\u00a0\u00bb-42px\u00a0\u00bb navi_color=\u00a0\u00bb#3A3A2A\u00a0\u00bb post_equal_height=\u00a0\u00bbon\u00a0\u00bb touch_move=\u00a0\u00bbon\u00a0\u00bb _builder_version=\u00a0\u00bb4.16&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb title_font=\u00a0\u00bbLora||||||||\u00a0\u00bb title_text_align=\u00a0\u00bbcenter\u00a0\u00bb background_color=\u00a0\u00bbRGBA(255,255,255,0)\u00a0\u00bb border_radii_post_box=\u00a0\u00bbon|18px|18px|18px|18px\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][\/dsm_blog_carousel][\/et_pb_column][\/et_pb_row][\/et_pb_section]<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Syndrome de Malan : comment un congr\u00e8s international a men\u00e9 \u00e0 la cr\u00e9ation de l&rsquo;association fran\u00e7aise en 2025 pour accompagner les familles et faire bouger les lignes.<\/p>\n","protected":false},"author":1,"featured_media":290,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_et_pb_use_builder":"on","_et_pb_old_content":"<!-- wp:paragraph -->\n<p>Welcome to WordPress. 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