{"id":315,"date":"2026-07-24T18:33:37","date_gmt":"2026-07-24T18:33:37","guid":{"rendered":"https:\/\/www.syndromedemalan.fr\/?p=315"},"modified":"2026-09-13T09:19:41","modified_gmt":"2026-09-13T09:19:41","slug":"syndrome-de-malan-mettre-un-nom-sur-linvisible","status":"publish","type":"post","link":"https:\/\/www.syndromedemalan.fr\/index.php\/2026\/07\/24\/syndrome-de-malan-mettre-un-nom-sur-linvisible\/","title":{"rendered":"Syndrome de Malan : mettre un nom sur l’invisible"},"content":{"rendered":"\n[et_pb_section fb_built=\u00a0\u00bb1″ admin_label=\u00a0\u00bbsection\u00a0\u00bb _builder_version=\u00a0\u00bb4.14.8″ background_color=\u00a0\u00bb#F2CB4B\u00a0\u00bb use_background_color_gradient=\u00a0\u00bbon\u00a0\u00bb background_color_gradient_start=\u00a0\u00bb#ffffff\u00a0\u00bb background_color_gradient_end=\u00a0\u00bb#fdffa3″ custom_margin=\u00a0\u00bb||-65px|||\u00a0\u00bb custom_padding=\u00a0\u00bb1px||2px|||\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_row admin_label=\u00a0\u00bbrow\u00a0\u00bb _builder_version=\u00a0\u00bb3.25″ 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\u00bb4_4″ _builder_version=\u00a0\u00bb3.25″ 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\u00bb4.14.8″ text_text_color=\u00a0\u00bb#0A0000″ 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]\u00c0 6 ans, la petite Th\u00e9odozia est diagnostiqu\u00e9e atteinte du syndrome de Malan, une maladie g\u00e9n\u00e9tique rare et complexe qui touche des familles du monde entier. Apr\u00e8s des ann\u00e9es d’incertitude et un v\u00e9ritable parcours du combattant m\u00e9dical, le diagnostic est enfin tomb\u00e9 en janvier 2025. Entre graves troubles de la vue (2\/10 \u00e0 chaque \u0153il) et retard de d\u00e9veloppement, sa m\u00e8re, Anne-Astrid, se bat au quotidien pour lui offrir une scolarit\u00e9 adapt\u00e9e et faire conna\u00eetre cette pathologie orpheline qui transforme chaque geste simple en un d\u00e9fi.[\/et_pb_text][et_pb_image src=\u00a0\u00bbhttp:\/\/www.syndromedemalan.fr\/wp-content\/uploads\/2026\/05\/article.webp\u00a0\u00bb title_text=\u00a0\u00bbarticle\u00a0\u00bb show_in_lightbox=\u00a0\u00bbon\u00a0\u00bb _builder_version=\u00a0\u00bb4.14.8″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb border_radii=\u00a0\u00bbon|20px|20px|20px|20px\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][\/et_pb_image][\/et_pb_column][\/et_pb_row][et_pb_row _builder_version=\u00a0\u00bb4.14.8″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb custom_padding=\u00a0\u00bb6px|||||\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb theme_builder_area=\u00a0\u00bbpost_content\u00a0\u00bb][et_pb_column type=\u00a0\u00bb4_4″ _builder_version=\u00a0\u00bb4.14.8″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb theme_builder_area=\u00a0\u00bbpost_content\u00a0\u00bb][dsm_blog_carousel include_categories=\u00a0\u00bb9″ 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\u00bb4.14.8″ _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 theme_builder_area=\u00a0\u00bbpost_content\u00a0\u00bb][\/dsm_blog_carousel][\/et_pb_column][\/et_pb_row][\/et_pb_section]\n","protected":false},"excerpt":{"rendered":"

\u00c0 6 ans, la petite Th\u00e9odozia est diagnostiqu\u00e9e atteinte du syndrome de Malan, une maladie g\u00e9n\u00e9tique rare et complexe qui touche des familles du monde entier. Apr\u00e8s des ann\u00e9es d’incertitude et un v\u00e9ritable parcours du combattant m\u00e9dical, le diagnostic est enfin tomb\u00e9 en janvier 2025. Entre graves troubles de la vue (2\/10 \u00e0 chaque \u0153il) […]<\/p>\n","protected":false},"author":1,"featured_media":61,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_et_pb_use_builder":"on","_et_pb_old_content":"","_et_gb_content_width":"2880","footnotes":""},"categories":[9],"tags":[],"class_list":["post-315","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-actu"],"yoast_head":"\nSyndrome de Malan : mettre un nom sur l'invisible - Asso Syndrome Malan<\/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:\/\/www.syndromedemalan.fr\/index.php\/2026\/07\/24\/syndrome-de-malan-mettre-un-nom-sur-linvisible\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Syndrome de Malan : mettre un nom sur l'invisible - Asso Syndrome Malan\" \/>\n<meta property=\"og:description\" content=\"\u00c0 6 ans, la petite Th\u00e9odozia est diagnostiqu\u00e9e atteinte du syndrome de Malan, une maladie g\u00e9n\u00e9tique rare et complexe qui touche des familles du monde entier. 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