{"id":24,"date":"2026-05-31T18:56:06","date_gmt":"2026-05-31T18:56:06","guid":{"rendered":"https:\/\/www.syndromedemalan.fr\/?page_id=24"},"modified":"2026-10-05T07:25:46","modified_gmt":"2026-10-05T07:25:46","slug":"home","status":"publish","type":"page","link":"https:\/\/www.syndromedemalan.fr\/","title":{"rendered":"Accueil"},"content":{"rendered":"<p>[et_pb_section fb_built=\u00a0\u00bb1&Prime; next_background_color=\u00a0\u00bb#ffffff\u00a0\u00bb _builder_version=\u00a0\u00bb4.16&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb background_image=\u00a0\u00bbhttp:\/\/www.syndromedemalan.fr\/wp-content\/uploads\/2026\/05\/mains2-scaled.webp\u00a0\u00bb parallax=\u00a0\u00bbon\u00a0\u00bb custom_padding=\u00a0\u00bb24px|||||\u00a0\u00bb bottom_divider_style=\u00a0\u00bbramp\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_row _builder_version=\u00a0\u00bb4.16&Prime; _module_preset=\u00a0\u00bbdefault\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][et_pb_image src=\u00a0\u00bbhttp:\/\/www.syndromedemalan.fr\/wp-content\/uploads\/2026\/05\/Logo-blanc.png\u00a0\u00bb title_text=\u00a0\u00bbLogo-blanc\u00a0\u00bb _builder_version=\u00a0\u00bb4.16&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb width=\u00a0\u00bb100%\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][\/et_pb_image][et_pb_text _builder_version=\u00a0\u00bb4.27.8&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb text_font=\u00a0\u00bb|600|||||||\u00a0\u00bb text_text_color=\u00a0\u00bb#3A3A2A\u00a0\u00bb text_font_size=\u00a0\u00bb17px\u00a0\u00bb text_line_height=\u00a0\u00bb1.8em\u00a0\u00bb header_font=\u00a0\u00bbLora||||||||\u00a0\u00bb header_font_size=\u00a0\u00bb28px\u00a0\u00bb header_2_font=\u00a0\u00bbLora||||||||\u00a0\u00bb header_2_font_size=\u00a0\u00bb74px\u00a0\u00bb background_enable_color=\u00a0\u00bboff\u00a0\u00bb use_background_color_gradient=\u00a0\u00bbon\u00a0\u00bb background_color_gradient_direction=\u00a0\u00bb196deg\u00a0\u00bb background_color_gradient_stops=\u00a0\u00bbrgba(255,255,255,0.51) 7%|#ffffff 100%\u00a0\u00bb background_color_gradient_start=\u00a0\u00bbrgba(255,255,255,0)\u00a0\u00bb background_color_gradient_start_position=\u00a0\u00bb7%\u00a0\u00bb background_color_gradient_end=\u00a0\u00bb#ffffff\u00a0\u00bb width=\u00a0\u00bb50%\u00a0\u00bb width_tablet=\u00a0\u00bb50%\u00a0\u00bb width_phone=\u00a0\u00bb100%\u00a0\u00bb width_last_edited=\u00a0\u00bbon|phone\u00a0\u00bb custom_padding=\u00a0\u00bb21px|24px|21px|24px|true|true\u00a0\u00bb header_font_size_tablet=\u00a0\u00bb28px\u00a0\u00bb header_font_size_phone=\u00a0\u00bb\u00a0\u00bb header_font_size_last_edited=\u00a0\u00bbon|phone\u00a0\u00bb header_2_font_size_tablet=\u00a0\u00bb74px\u00a0\u00bb header_2_font_size_phone=\u00a0\u00bb41px\u00a0\u00bb header_2_font_size_last_edited=\u00a0\u00bbon|phone\u00a0\u00bb border_radii=\u00a0\u00bbon|20px|20px|20px|20px\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb]<\/p>\n<h1>Association Syndrome de Malan<\/h1>\n<h2>Comprendre,<br \/>Soutenir, Agir.<\/h2>\n<p>Association de familles touch\u00e9es par le Syndrome de Malan. Nous offrons soutien, entraide et information pour am\u00e9liorer la qualit\u00e9 de vie de nos enfants et proches<\/p>\n<p>[\/et_pb_text][et_pb_button button_url=\u00a0\u00bbhttps:\/\/www.syndromedemalan.fr\/index.php\/malan\u00a0\u00bb button_text=\u00a0\u00bben savoir plus sur le Syndrome de Malan\u00a0\u00bb button_alignment_tablet=\u00a0\u00bbcenter\u00a0\u00bb button_alignment_phone=\u00a0\u00bbcenter\u00a0\u00bb button_alignment_last_edited=\u00a0\u00bbon|tablet\u00a0\u00bb _builder_version=\u00a0\u00bb4.16&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb custom_button=\u00a0\u00bbon\u00a0\u00bb button_text_color=\u00a0\u00bb#FFFFFF\u00a0\u00bb button_bg_color=\u00a0\u00bb#EF823F\u00a0\u00bb button_border_width=\u00a0\u00bb0px\u00a0\u00bb button_border_radius=\u00a0\u00bb100px\u00a0\u00bb button_font=\u00a0\u00bb|600||on|||||\u00a0\u00bb custom_margin=\u00a0\u00bb||23px|||\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][\/et_pb_button][et_pb_button button_url=\u00a0\u00bbhttps:\/\/www.helloasso.com\/associations\/association-syndrome-de-malan-france\/formulaires\/1&Prime; button_text=\u00a0\u00bbFaire un don\u00a0\u00bb button_alignment_tablet=\u00a0\u00bbcenter\u00a0\u00bb button_alignment_phone=\u00a0\u00bbcenter\u00a0\u00bb button_alignment_last_edited=\u00a0\u00bbon|tablet\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.8&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb custom_button=\u00a0\u00bbon\u00a0\u00bb button_text_color=\u00a0\u00bb#FFFFFF\u00a0\u00bb button_bg_color=\u00a0\u00bb#FFB754&Prime; button_border_width=\u00a0\u00bb0px\u00a0\u00bb button_border_radius=\u00a0\u00bb100px\u00a0\u00bb button_font=\u00a0\u00bb|600||on|||||\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][\/et_pb_button][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=\u00a0\u00bb1&Prime; admin_label=\u00a0\u00bbAbout Section\u00a0\u00bb _builder_version=\u00a0\u00bb4.16&Prime; background_color=\u00a0\u00bb#ffffff\u00a0\u00bb custom_padding=\u00a0\u00bb6px|0px|6px|0px|true|false\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_row column_structure=\u00a0\u00bb2_5,3_5&Prime; _builder_version=\u00a0\u00bb4.16&Prime; custom_padding=\u00a0\u00bb||4px|||\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\/05\/Logo-fond-transparent-PNG.png\u00a0\u00bb title_text=\u00a0\u00bbLogo fond transparent PNG\u00a0\u00bb _builder_version=\u00a0\u00bb4.16&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb custom_padding=\u00a0\u00bb||0px|||\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][\/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 _builder_version=\u00a0\u00bb4.16&Prime; text_font=\u00a0\u00bb||||||||\u00a0\u00bb header_font=\u00a0\u00bb||||||||\u00a0\u00bb header_text_color=\u00a0\u00bb#EF823F\u00a0\u00bb header_2_font=\u00a0\u00bbLora|500|||||||\u00a0\u00bb header_2_text_color=\u00a0\u00bb#EF823F\u00a0\u00bb header_2_font_size=\u00a0\u00bb50px\u00a0\u00bb header_2_line_height=\u00a0\u00bb1.2em\u00a0\u00bb header_5_font=\u00a0\u00bbOswald|||on|||||\u00a0\u00bb header_5_text_color=\u00a0\u00bbrgba(0,0,0,0.4)\u00a0\u00bb header_5_font_size=\u00a0\u00bb20px\u00a0\u00bb header_5_letter_spacing=\u00a0\u00bb3px\u00a0\u00bb text_orientation=\u00a0\u00bbcenter\u00a0\u00bb max_width=\u00a0\u00bb600px\u00a0\u00bb module_alignment=\u00a0\u00bbcenter\u00a0\u00bb custom_padding=\u00a0\u00bb15px|||||\u00a0\u00bb text_line_height_last_edited=\u00a0\u00bboff|desktop\u00a0\u00bb header_2_font_size_tablet=\u00a0\u00bb50px\u00a0\u00bb header_2_font_size_phone=\u00a0\u00bb26px\u00a0\u00bb header_2_font_size_last_edited=\u00a0\u00bbon|phone\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb]<\/p>\n<h2>Le Syndrome de Malan en quelques mots<\/h2>\n<p>[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row _builder_version=\u00a0\u00bb4.16&Prime; custom_padding=\u00a0\u00bb0px|||||\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_column type=\u00a0\u00bb4_4&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 _builder_version=\u00a0\u00bb4.16&Prime; text_font=\u00a0\u00bb||||||||\u00a0\u00bb text_text_color=\u00a0\u00bb#3A3A2A\u00a0\u00bb text_font_size=\u00a0\u00bb18px\u00a0\u00bb link_font=\u00a0\u00bb||||||||\u00a0\u00bb ul_font=\u00a0\u00bb||||||||\u00a0\u00bb ol_font=\u00a0\u00bb||||||||\u00a0\u00bb quote_font=\u00a0\u00bb||||||||\u00a0\u00bb header_font=\u00a0\u00bb||||||||\u00a0\u00bb header_2_font=\u00a0\u00bb||||||||\u00a0\u00bb header_3_font=\u00a0\u00bbOswald|||on|||||\u00a0\u00bb header_3_font_size=\u00a0\u00bb20px\u00a0\u00bb header_3_letter_spacing=\u00a0\u00bb3px\u00a0\u00bb header_3_line_height=\u00a0\u00bb1.5em\u00a0\u00bb header_4_font=\u00a0\u00bb||||||||\u00a0\u00bb custom_padding=\u00a0\u00bb13px|||||\u00a0\u00bb text_line_height_last_edited=\u00a0\u00bboff|desktop\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb]<\/p>\n<p>Le syndrome de Malan est une <strong>maladie g\u00e9n\u00e9tique rare<\/strong> identifi\u00e9e en 2010, li\u00e9e \u00e0 une anomalie du g\u00e8ne NFIX sur le chromosome 19, le plus souvent apparue spontan\u00e9ment (mutation de novo). Il s&rsquo;agit d&rsquo;un<strong> trouble du d\u00e9veloppement<\/strong> dont les manifestations varient fortement d&rsquo;une personne \u00e0 l&rsquo;autre.<\/p>\n<p><strong>Les principales caract\u00e9ristiques<\/strong><\/p>\n<p>Les personnes atteintes peuvent pr\u00e9senter :<\/p>\n<ul>\n<li>un retard du d\u00e9veloppement moteur et du langage ;<\/li>\n<li>une d\u00e9ficience intellectuelle d&rsquo;intensit\u00e9 variable ;<\/li>\n<li>une grande taille, une macroc\u00e9phalie et des particularit\u00e9s du visage ;<\/li>\n<li>une hypotonie et des anomalies du squelette ;<\/li>\n<li>des troubles de la vision, du comportement ou du neurod\u00e9veloppement (anxi\u00e9t\u00e9, troubles de l&rsquo;attention, traits du spectre de l&rsquo;autisme) ;<\/li>\n<li>plus rarement, une \u00e9pilepsie ou des anomalies c\u00e9r\u00e9brales.<\/li>\n<\/ul>\n<p>Toutes les personnes porteuses du syndrome de Malan ne pr\u00e9sentent pas l&rsquo;ensemble de ces caract\u00e9ristiques, et leur intensit\u00e9 peut \u00eatre tr\u00e8s variable.<\/p>\n<p>[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=\u00a0\u00bb1&Prime; prev_background_color=\u00a0\u00bb#ffffff\u00a0\u00bb next_background_color=\u00a0\u00bb#FFFFFF\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.8&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb background_color=\u00a0\u00bb#ECBE48&Prime; custom_padding=\u00a0\u00bb||28px|||\u00a0\u00bb top_divider_style=\u00a0\u00bbwaves2&Prime; top_divider_style_tablet=\u00a0\u00bbwaves2&Prime; top_divider_style_phone=\u00a0\u00bbslant2&Prime; top_divider_style_last_edited=\u00a0\u00bbon|phone\u00a0\u00bb bottom_divider_style=\u00a0\u00bbtriangle\u00a0\u00bb bottom_divider_style_tablet=\u00a0\u00bbtriangle\u00a0\u00bb bottom_divider_style_phone=\u00a0\u00bbramp2&Prime; bottom_divider_style_last_edited=\u00a0\u00bbon|phone\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_row _builder_version=\u00a0\u00bb4.16&Prime; _module_preset=\u00a0\u00bbdefault\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][et_pb_text _builder_version=\u00a0\u00bb4.16&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb text_font=\u00a0\u00bb||||||||\u00a0\u00bb header_font=\u00a0\u00bb||||||||\u00a0\u00bb header_2_font=\u00a0\u00bbLora|700|||||||\u00a0\u00bb header_2_font_size=\u00a0\u00bb50px\u00a0\u00bb header_2_line_height=\u00a0\u00bb1.5em\u00a0\u00bb header_5_font=\u00a0\u00bbOswald|||on|||||\u00a0\u00bb header_5_text_color=\u00a0\u00bbrgba(0,0,0,0.4)\u00a0\u00bb header_5_font_size=\u00a0\u00bb20px\u00a0\u00bb header_5_letter_spacing=\u00a0\u00bb3px\u00a0\u00bb text_orientation=\u00a0\u00bbcenter\u00a0\u00bb max_width=\u00a0\u00bb600px\u00a0\u00bb module_alignment=\u00a0\u00bbcenter\u00a0\u00bb header_2_font_size_tablet=\u00a0\u00bb50px\u00a0\u00bb header_2_font_size_phone=\u00a0\u00bb33px\u00a0\u00bb header_2_font_size_last_edited=\u00a0\u00bbon|phone\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb]<\/p>\n<h2>Notre association<\/h2>\n<p>[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=\u00a0\u00bb1_3,1_3,1_3&Prime; use_custom_gutter=\u00a0\u00bbon\u00a0\u00bb gutter_width=\u00a0\u00bb3&Prime; _builder_version=\u00a0\u00bb4.16&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb custom_padding=\u00a0\u00bb7px||108px|||\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_column type=\u00a0\u00bb1_3&Prime; _builder_version=\u00a0\u00bb4.16&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb background_color=\u00a0\u00bb#FFFFFF\u00a0\u00bb custom_padding=\u00a0\u00bb10px|10px|10px|10px|true|true\u00a0\u00bb border_radii=\u00a0\u00bbon|15px|15px|15px|15px\u00a0\u00bb box_shadow_style=\u00a0\u00bbpreset2&Prime; global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][dsm_card title=\u00a0\u00bb Soutien aux Familles\u00a0\u00bb use_content_icon=\u00a0\u00bbon\u00a0\u00bb font_icon=\u00a0\u00bb&#xf684;||fa||900&Prime; icon_color=\u00a0\u00bb#EF823F\u00a0\u00bb circle_color=\u00a0\u00bbRGBA(255,255,255,0)\u00a0\u00bb image_alignment=\u00a0\u00bbcenter\u00a0\u00bb badge_text=\u00a0\u00bbBadget Text\u00a0\u00bb button_url_new_window=\u00a0\u00bb1&Prime; _builder_version=\u00a0\u00bb4.16&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb header_level=\u00a0\u00bbh3&Prime; header_font=\u00a0\u00bbLora|300|||||||\u00a0\u00bb header_text_align=\u00a0\u00bbcenter\u00a0\u00bb header_font_size=\u00a0\u00bb23px\u00a0\u00bb header_line_height=\u00a0\u00bb1.3em\u00a0\u00bb body_font=\u00a0\u00bb||||||||\u00a0\u00bb body_text_color=\u00a0\u00bb#242424&Prime; body_font_size=\u00a0\u00bb16px\u00a0\u00bb body_line_height=\u00a0\u00bb1.4em\u00a0\u00bb background_color=\u00a0\u00bb#FFFFFF\u00a0\u00bb text_orientation=\u00a0\u00bbcenter\u00a0\u00bb animation_style=\u00a0\u00bbfade\u00a0\u00bb border_radii=\u00a0\u00bbon|12px|12px|12px|12px\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb]<\/p>\n<p><span>Nous accompagnons les familles dans leur parcours : \u00e9coute, partage d&rsquo;exp\u00e9riences et acc\u00e8s aux bonnes ressources.<\/span><\/p>\n<p>[\/dsm_card][\/et_pb_column][et_pb_column type=\u00a0\u00bb1_3&Prime; _builder_version=\u00a0\u00bb4.16&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb background_color=\u00a0\u00bb#FFFFFF\u00a0\u00bb custom_padding=\u00a0\u00bb10px|10px|10px|10px|true|true\u00a0\u00bb border_radii=\u00a0\u00bbon|15px|15px|15px|15px\u00a0\u00bb box_shadow_style=\u00a0\u00bbpreset2&Prime; global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][dsm_card title=\u00a0\u00bbInformation &#038; Sensibilisation\u00a0\u00bb use_content_icon=\u00a0\u00bbon\u00a0\u00bb font_icon=\u00a0\u00bb&#xf518;||fa||900&Prime; icon_color=\u00a0\u00bb#EF823F\u00a0\u00bb circle_color=\u00a0\u00bbRGBA(255,255,255,0)\u00a0\u00bb badge_text=\u00a0\u00bbBadget Text\u00a0\u00bb button_url_new_window=\u00a0\u00bb1&Prime; _builder_version=\u00a0\u00bb4.16&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb header_level=\u00a0\u00bbh3&Prime; header_font=\u00a0\u00bbLora|300|||||||\u00a0\u00bb header_text_align=\u00a0\u00bbcenter\u00a0\u00bb header_font_size=\u00a0\u00bb23px\u00a0\u00bb header_line_height=\u00a0\u00bb1.3em\u00a0\u00bb body_font=\u00a0\u00bb||||||||\u00a0\u00bb body_text_color=\u00a0\u00bb#242424&Prime; body_font_size=\u00a0\u00bb16px\u00a0\u00bb body_line_height=\u00a0\u00bb1.4em\u00a0\u00bb background_color=\u00a0\u00bb#FFFFFF\u00a0\u00bb text_orientation=\u00a0\u00bbcenter\u00a0\u00bb animation_style=\u00a0\u00bbfade\u00a0\u00bb border_radii=\u00a0\u00bbon|12px|12px|12px|12px\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb]<\/p>\n<p><span>Nous informons sur le Syndrome et sensibilisons le grand public et les professionnels de sant\u00e9.<\/span><\/p>\n<p>[\/dsm_card][\/et_pb_column][et_pb_column type=\u00a0\u00bb1_3&Prime; _builder_version=\u00a0\u00bb4.16&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb background_color=\u00a0\u00bb#FFFFFF\u00a0\u00bb custom_padding=\u00a0\u00bb10px|10px|10px|10px|true|true\u00a0\u00bb border_radii=\u00a0\u00bbon|15px|15px|15px|15px\u00a0\u00bb box_shadow_style=\u00a0\u00bbpreset2&Prime; global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][dsm_card title=\u00a0\u00bbCommunaut\u00e9 &#038; Entraide\u00a0\u00bb use_content_icon=\u00a0\u00bbon\u00a0\u00bb font_icon=\u00a0\u00bb&#xf0c0;||fa||900&Prime; icon_color=\u00a0\u00bb#EF823F\u00a0\u00bb circle_color=\u00a0\u00bbRGBA(255,255,255,0)\u00a0\u00bb badge_text=\u00a0\u00bbBadget Text\u00a0\u00bb button_url_new_window=\u00a0\u00bb1&Prime; _builder_version=\u00a0\u00bb4.16&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb header_level=\u00a0\u00bbh3&Prime; header_font=\u00a0\u00bbLora|300|||||||\u00a0\u00bb header_text_align=\u00a0\u00bbcenter\u00a0\u00bb header_font_size=\u00a0\u00bb23px\u00a0\u00bb header_line_height=\u00a0\u00bb1.3em\u00a0\u00bb body_font=\u00a0\u00bb||||||||\u00a0\u00bb body_text_color=\u00a0\u00bb#242424&Prime; body_font_size=\u00a0\u00bb16px\u00a0\u00bb body_line_height=\u00a0\u00bb1.4em\u00a0\u00bb background_color=\u00a0\u00bb#FFFFFF\u00a0\u00bb text_orientation=\u00a0\u00bbcenter\u00a0\u00bb animation_style=\u00a0\u00bbfade\u00a0\u00bb border_radii=\u00a0\u00bbon|12px|12px|12px|12px\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb]<\/p>\n<p><span>Un r\u00e9seau de familles qui se comprennent et s&rsquo;entraident face aux d\u00e9fis quotidiens du Syndrome.<\/span><\/p>\n<p>[\/dsm_card][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=\u00a0\u00bb1&Prime; _builder_version=\u00a0\u00bb4.16&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb background_color=\u00a0\u00bb#FFFFFF\u00a0\u00bb custom_padding=\u00a0\u00bb||11px|||\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_row column_structure=\u00a0\u00bb2_5,3_5&Prime; _builder_version=\u00a0\u00bb4.16&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb custom_padding=\u00a0\u00bb16px|||||\u00a0\u00bb animation_style=\u00a0\u00bbflip\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_column type=\u00a0\u00bb2_5&Prime; _builder_version=\u00a0\u00bb4.16&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_image src=\u00a0\u00bbhttp:\/\/www.syndromedemalan.fr\/wp-content\/uploads\/2026\/05\/Logo-fond-transparent-PNG.png\u00a0\u00bb title_text=\u00a0\u00bbLogo fond transparent PNG\u00a0\u00bb _builder_version=\u00a0\u00bb4.16&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb width=\u00a0\u00bb100%\u00a0\u00bb module_alignment=\u00a0\u00bbright\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][\/et_pb_image][\/et_pb_column][et_pb_column type=\u00a0\u00bb3_5&Prime; _builder_version=\u00a0\u00bb4.16&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_text _builder_version=\u00a0\u00bb4.16&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb text_font=\u00a0\u00bb||||||||\u00a0\u00bb text_text_color=\u00a0\u00bb#3A3A2A\u00a0\u00bb text_font_size=\u00a0\u00bb18px\u00a0\u00bb link_font=\u00a0\u00bb||||||||\u00a0\u00bb ul_font=\u00a0\u00bb||||||||\u00a0\u00bb ol_font=\u00a0\u00bb||||||||\u00a0\u00bb quote_font=\u00a0\u00bb||||||||\u00a0\u00bb header_font=\u00a0\u00bb||||||||\u00a0\u00bb header_2_font=\u00a0\u00bbLora||||||||\u00a0\u00bb header_2_text_color=\u00a0\u00bb#D5783E\u00a0\u00bb header_3_font=\u00a0\u00bbOswald|||on|||||\u00a0\u00bb header_3_font_size=\u00a0\u00bb20px\u00a0\u00bb header_3_letter_spacing=\u00a0\u00bb3px\u00a0\u00bb header_3_line_height=\u00a0\u00bb1.5em\u00a0\u00bb header_4_font=\u00a0\u00bb||||||||\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb]<\/p>\n<h2>Pourquoi nous existons<\/h2>\n<p>L&rsquo;exp\u00e9rience partag\u00e9e de l&rsquo;incertitude nous a unies. Val\u00e9rie, C\u00e9cile et Anne-Astrid : nous sommes toutes<strong> trois mamans d&rsquo;enfants atteints du Syndrome de Malan<\/strong>. Confront\u00e9es au manque d&rsquo;informations en France et trouvant des r\u00e9ponses principalement aux \u00c9tats-Unis et en Espagne, nous avons d\u00e9cid\u00e9 de cr\u00e9er cette association. Notre objectif commun est d&rsquo;<strong>offrir soutien et information aux familles touch\u00e9es par le Syndrome de Malan<\/strong>.<\/p>\n<p>[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=\u00a0\u00bb1&Prime; _builder_version=\u00a0\u00bb4.27.8&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb use_background_color_gradient=\u00a0\u00bbon\u00a0\u00bb background_color_gradient_direction=\u00a0\u00bb178deg\u00a0\u00bb background_color_gradient_stops=\u00a0\u00bb#ffffff 0%|#fdffa3 100%\u00a0\u00bb custom_padding=\u00a0\u00bb25px||56px|||\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_row column_structure=\u00a0\u00bb1_2,1_2&Prime; _builder_version=\u00a0\u00bb4.27.8&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb background_color=\u00a0\u00bb#FFFFFF\u00a0\u00bb custom_margin=\u00a0\u00bb|auto||auto|false|false\u00a0\u00bb custom_padding=\u00a0\u00bb30px|30px|30px|30px|true|true\u00a0\u00bb border_radii=\u00a0\u00bbon|20px|20px|20px|20px\u00a0\u00bb box_shadow_style=\u00a0\u00bbpreset2&Prime; global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_column type=\u00a0\u00bb1_2&Prime; _builder_version=\u00a0\u00bb4.16&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_image src=\u00a0\u00bbhttp:\/\/www.syndromedemalan.fr\/wp-content\/uploads\/2026\/06\/anne-astrid3.webp\u00a0\u00bb title_text=\u00a0\u00bbanne-astrid3&Prime; align=\u00a0\u00bbcenter\u00a0\u00bb _builder_version=\u00a0\u00bb4.16&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb width=\u00a0\u00bb20%\u00a0\u00bb width_tablet=\u00a0\u00bb60%\u00a0\u00bb width_phone=\u00a0\u00bb60%\u00a0\u00bb width_last_edited=\u00a0\u00bbon|tablet\u00a0\u00bb module_alignment=\u00a0\u00bbcenter\u00a0\u00bb border_radii=\u00a0\u00bbon|10px|10px|10px|10px\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][\/et_pb_image][et_pb_team_member name=\u00a0\u00bbAnne-Astrid \u00a0\u00bb _builder_version=\u00a0\u00bb4.16&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb header_level=\u00a0\u00bbh3&Prime; header_font=\u00a0\u00bbLora||||||||\u00a0\u00bb header_text_align=\u00a0\u00bbcenter\u00a0\u00bb header_text_color=\u00a0\u00bb#D5783E\u00a0\u00bb header_font_size=\u00a0\u00bb25px\u00a0\u00bb body_text_color=\u00a0\u00bb#0A0000&Prime; body_link_text_color=\u00a0\u00bb#D5533F\u00a0\u00bb background_color=\u00a0\u00bbRGBA(255,255,255,0)\u00a0\u00bb width=\u00a0\u00bb100%\u00a0\u00bb max_width=\u00a0\u00bb100%\u00a0\u00bb border_radii_image=\u00a0\u00bbon|24px|24px|24px|24px\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb]<\/p>\n<p>Je m&rsquo;appelle Anne-Astrid Simonnet, je suis maman d&rsquo;une petite Th\u00e9odozia, lumineuse et courageuse, \u00e2g\u00e9e de 7 ans. Elle a \u00e9t\u00e9 diagnostiqu\u00e9e en janvier 2025 du Syndrome de Malan. B\u00e9b\u00e9, elle grandissait comme tous les autres, avec ses sourires, ses gazouillis, ses premi\u00e8res d\u00e9couvertes. Rien ne laissait pr\u00e9sager ce qui allait suivre. Mais<strong> petit \u00e0 petit, nous avons remarqu\u00e9 que son apprentissage et son \u00e9volution \u00e9taient diff\u00e9rents.<\/strong> Plus lents, plus fragiles, parfois incompris. Chaque \u00e9tape, se retourner, s\u2019asseoir, marcher, parler semblait lui demander un effort immense, comme si elle gravissait une montagne invisible que les autres enfants franchissaient sans m\u00eame s\u2019en rendre compte.<br \/>Et l\u00e0, ce fut le choc. Le diagnostic est arriv\u00e9 apr\u00e8s une longue attente, jalonn\u00e9e d\u2019examens, de doutes, et d\u2019un parcours m\u00e9dical sem\u00e9 d\u2019incompr\u00e9hensions et cela, malgr\u00e9 notre propre appartenance au corps m\u00e9dical. Avant d\u2019obtenir enfin l\u2019autorisation de r\u00e9aliser un test g\u00e9n\u00e9tique, nous avons perdu un temps pr\u00e9cieux \u00e0 chercher des r\u00e9ponses, \u00e0 multiplier les consultations, \u00e0 nous questionner, nous culpabiliser souvent sans v\u00e9ritable \u00e9coute. Le Syndrome de Malan \u00e9tant encore trop m\u00e9connu, chaque rendez-vous ressemblait davantage \u00e0 une qu\u00eate solitaire qu\u2019\u00e0 un accompagnement \u00e9clair\u00e9.<br \/>En tant que maman, j\u2019ai d\u00fb <strong>faire des choix sans rep\u00e8res, sans soutien clair.<\/strong> Chaque d\u00e9cision qu&rsquo;elle soit scolaire, m\u00e9dicale ou th\u00e9rapeutique s\u2019est faite dans le brouillard, avec le poids de l\u2019incertitude. Nous avons \u00e9t\u00e9 confront\u00e9s \u00e0 des jugements, des hypoth\u00e8ses non fond\u00e9es, des \u00e9tiquettes pos\u00e9es trop vite. Et pendant ce temps, ma fille attendait qu\u2019on la comprenne. Chez elle, c\u2019est la vue qui a \u00e9t\u00e9 le plus touch\u00e9e : nerf optique gr\u00eale, chiasma alt\u00e9r\u00e9, une acuit\u00e9 visuelle de 1\/10 dans chaque \u0153il, 2\/10 avec correction. Elle n\u2019a march\u00e9 qu\u2019\u00e0 3 ans et demi, et pr\u00e9sente un retard global dans ses acquisitions : motricit\u00e9 fine, langage, compr\u00e9hension\u2026 Mais elle avance, avec une force et une douceur qui bouleversent et surprend toujours. Ces enfants sont surnomm\u00e9s les Tournesols : une grande tige fragile, mais une capacit\u00e9 \u00e0 rester debout face aux temp\u00eates. Ils sont lumineux, gentils, et r\u00e9silients. Et oui, ces enfants ne rentrent dans aucune case.<\/p>\n<p>Apr\u00e8s avoir discut\u00e9 avec de autres mamans (Val\u00e9rie et C\u00e9cile), <strong>nous avons d\u00e9cid\u00e9 la cr\u00e9ation de l&rsquo;association du Syndrome Malan France<\/strong> en 2025. Pour se rassembler malgr\u00e9 les distances, partager les parcours pour l\u2019\u00e9ducation, les soins, et la reconnaissance du Syndrome de Malan. Un combat quotidien, avec une vision incertaine de l\u2019avenir, et des choix difficiles \u00e0 faire entre les handicaps pr\u00e9sents.<\/p>\n<p>[\/et_pb_team_member][\/et_pb_column][et_pb_column type=\u00a0\u00bb1_2&Prime; _builder_version=\u00a0\u00bb4.16&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_team_member _builder_version=\u00a0\u00bb4.16&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb header_level=\u00a0\u00bbh3&Prime; header_font=\u00a0\u00bbLora||||||||\u00a0\u00bb header_text_align=\u00a0\u00bbcenter\u00a0\u00bb header_text_color=\u00a0\u00bb#D5783E\u00a0\u00bb header_font_size=\u00a0\u00bb25px\u00a0\u00bb body_text_color=\u00a0\u00bb#0A0000&Prime; body_link_text_color=\u00a0\u00bb#D5533F\u00a0\u00bb background_color=\u00a0\u00bbRGBA(255,255,255,0)\u00a0\u00bb width=\u00a0\u00bb100%\u00a0\u00bb max_width=\u00a0\u00bb100%\u00a0\u00bb border_radii_image=\u00a0\u00bbon|24px|24px|24px|24px\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb]<\/p>\n<p>La petite Th\u00e9odozia est un rayon de soleil. Elle illumine nos vies par sa tendresse, sa joie, sa force tranquille. Elle nous apprend chaque jour \u00e0 regarder autrement, \u00e0 aimer plus fort, \u00e0 croire en l\u2019impossible (mot qu&rsquo;elle m&rsquo;a fait bannir de mon vocabulaire) .<br \/>A ce jour, je remercie tous les accompagnants (professionnels de soins, scolaire, extra-scolaire) qui ont cru en elle et ses capacit\u00e9s, le journal de ma r\u00e9gion qui m&rsquo;a permis de faire d\u00e9couvrir ce Syndrome et mes coll\u00e8gues du bloc (infirmier et chirurgien) qui m&rsquo;ont aid\u00e9 dans le parcours de soins et ont couru \u00e0 l&rsquo;\u00e9kiden pour les enfants malan connus, ainsi que ma famille. Tous ont aid\u00e9 avec leur moyen et leur savoir \u00e0 un \u00e9panouissement, une reconnaissance, une compr\u00e9hension et une adaptation pour son bien-\u00eatre physique, mental, \u00e9motionnel et qu&rsquo;elle puisse \u00eatre Elle cherchant toujours le d\u00e9passement du handicap et sa propre logique.<\/p>\n<p>[\/et_pb_team_member][et_pb_image src=\u00a0\u00bbhttp:\/\/www.syndromedemalan.fr\/wp-content\/uploads\/2026\/06\/anne1.webp\u00a0\u00bb title_text=\u00a0\u00bbanne1&Prime; show_in_lightbox=\u00a0\u00bbon\u00a0\u00bb _builder_version=\u00a0\u00bb4.16&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb animation_style=\u00a0\u00bbflip\u00a0\u00bb border_radii=\u00a0\u00bbon|20px|20px|20px|20px\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][\/et_pb_image][et_pb_image src=\u00a0\u00bbhttp:\/\/www.syndromedemalan.fr\/wp-content\/uploads\/2026\/06\/anne2.webp\u00a0\u00bb title_text=\u00a0\u00bbanne2&Prime; show_in_lightbox=\u00a0\u00bbon\u00a0\u00bb _builder_version=\u00a0\u00bb4.16&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb animation_style=\u00a0\u00bbflip\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_section][et_pb_section fb_built=\u00a0\u00bb1&Prime; _builder_version=\u00a0\u00bb4.27.8&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb use_background_color_gradient=\u00a0\u00bbon\u00a0\u00bb background_color_gradient_direction=\u00a0\u00bb360deg\u00a0\u00bb background_color_gradient_stops=\u00a0\u00bb#ffffff 0%|#fdffa3 100%\u00a0\u00bb custom_padding=\u00a0\u00bb7px||62px|||\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_row column_structure=\u00a0\u00bb1_2,1_2&Prime; _builder_version=\u00a0\u00bb4.27.8&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb background_color=\u00a0\u00bb#FFFFFF\u00a0\u00bb width=\u00a0\u00bb79.7%\u00a0\u00bb custom_margin=\u00a0\u00bb|auto|39px|auto||\u00a0\u00bb custom_padding=\u00a0\u00bb30px|30px|30px|30px|false|false\u00a0\u00bb border_radii=\u00a0\u00bbon|20px|20px|20px|20px\u00a0\u00bb box_shadow_style=\u00a0\u00bbpreset2&Prime; global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_column type=\u00a0\u00bb1_2&Prime; _builder_version=\u00a0\u00bb4.16&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_image src=\u00a0\u00bbhttp:\/\/www.syndromedemalan.fr\/wp-content\/uploads\/2026\/09\/portraits-cecile.webp\u00a0\u00bb title_text=\u00a0\u00bbportraits cecile\u00a0\u00bb align=\u00a0\u00bbcenter\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.8&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb width=\u00a0\u00bb20%\u00a0\u00bb width_tablet=\u00a0\u00bb60%\u00a0\u00bb width_phone=\u00a0\u00bb60%\u00a0\u00bb width_last_edited=\u00a0\u00bbon|tablet\u00a0\u00bb module_alignment=\u00a0\u00bbcenter\u00a0\u00bb border_radii=\u00a0\u00bbon|10px|10px|10px|10px\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][\/et_pb_image][et_pb_team_member name=\u00a0\u00bbC\u00e9cile\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.8&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb header_level=\u00a0\u00bbh3&Prime; header_font=\u00a0\u00bbLora||||||||\u00a0\u00bb header_text_align=\u00a0\u00bbcenter\u00a0\u00bb header_text_color=\u00a0\u00bb#D5783E\u00a0\u00bb header_font_size=\u00a0\u00bb25px\u00a0\u00bb body_text_color=\u00a0\u00bb#0A0000&Prime; background_color=\u00a0\u00bbRGBA(255,255,255,0)\u00a0\u00bb width=\u00a0\u00bb100%\u00a0\u00bb max_width=\u00a0\u00bb100%\u00a0\u00bb custom_margin=\u00a0\u00bb|||1px||\u00a0\u00bb border_radii_image=\u00a0\u00bbon|24px|24px|24px|24px\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb]<\/p>\n<p>Je suis la maman d\u2019Iris n\u00e9e en 2023. <strong>Iris a \u00e9t\u00e9 diagnostiqu\u00e9e \u00e0 l\u2019\u00e2ge de 21 mois<\/strong>, un diagnostic particuli\u00e8rement pr\u00e9coce compar\u00e9 \u00e0 celui de nombreux autres enfants. C&rsquo;est son ophtalmologue qui a \u00e9mis des premiers doutes et qui nous a orient\u00e9 tr\u00e8s t\u00f4t vers un neurop\u00e9diatre. Quelques mois plus tard et un test g\u00e9n\u00e9tique r\u00e9alis\u00e9, nous pouvions d\u00e9sormais expliquer pourquoi notre fille n&rsquo;avan\u00e7ait pas comme les autres et pouvoir y mettre un nom : Syndrome de Malan. Iris pr\u00e9sente toujours aujourd&rsquo;hui un retard de d\u00e9veloppement important mais elle progresse \u00e0 son rythme. Elle illumine notre entourage par ses sourires et son rire.<br \/>Iris est accueillie \u00e0 l&rsquo;\u00e9cole maternelle classique et est suivie dans un CAMSP o\u00f9 toutes les semaines elle a un suivi en kin\u00e9, orthophonie, ergoth\u00e9rapie et psychomotricit\u00e9. Nous avons \u00e9galement fait le choix d&rsquo;essayer des th\u00e9rapies intensives (Tomatis, CME Medek notamment) pour l&rsquo;aider au maximum \u00e0 d\u00e9velopper ses capacit\u00e9s. Chaque progr\u00e8s est une victoire que nous savourons pr\u00e9cieusement.<\/p>\n<p>A l\u2019annonce du diagnostic, avec son papa, nous avons tr\u00e8s vite voulu \u00eatre en contact avec d\u2019autres familles et donner du sens \u00e0 cette nouvelle vie. Nous nous sommes tr\u00e8s vite rendus compte, qu\u2019<strong>en France, aucune association n\u2019existait pour soutenir les familles et accompagner les personnes porteuses de cette anomalie g\u00e9n\u00e9tique.<\/strong> Un vrai manque. L\u2019id\u00e9e de cr\u00e9er cette association a germ\u00e9 et ce fut une \u00e9vidence de<strong> s\u2019associer \u00e0 Val\u00e9rie et Anne-Astrid dans cette aventure solidaire<\/strong> et cr\u00e9er ensemble cette association.<\/p>\n<p>[\/et_pb_team_member][et_pb_image src=\u00a0\u00bbhttp:\/\/www.syndromedemalan.fr\/wp-content\/uploads\/2026\/06\/cecile4.webp\u00a0\u00bb title_text=\u00a0\u00bbcecile4&Prime; show_in_lightbox=\u00a0\u00bbon\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.8&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb animation_style=\u00a0\u00bbflip\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_column type=\u00a0\u00bb1_2&Prime; _builder_version=\u00a0\u00bb4.27.8&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_image src=\u00a0\u00bbhttp:\/\/www.syndromedemalan.fr\/wp-content\/uploads\/2026\/09\/cecile7.webp\u00a0\u00bb title_text=\u00a0\u00bbcecile7&Prime; show_in_lightbox=\u00a0\u00bbon\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.8&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb custom_margin=\u00a0\u00bb||||false|false\u00a0\u00bb custom_padding=\u00a0\u00bb||||false|false\u00a0\u00bb animation_style=\u00a0\u00bbflip\u00a0\u00bb border_radii=\u00a0\u00bbon|20px|20px|20px|20px\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][\/et_pb_image][et_pb_image src=\u00a0\u00bbhttp:\/\/www.syndromedemalan.fr\/wp-content\/uploads\/2026\/09\/cecile6.webp\u00a0\u00bb title_text=\u00a0\u00bbcecile6&Prime; show_in_lightbox=\u00a0\u00bbon\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.8&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb custom_margin=\u00a0\u00bb-24px||11px|||\u00a0\u00bb animation_style=\u00a0\u00bbflip\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_section][et_pb_section fb_built=\u00a0\u00bb1&Prime; _builder_version=\u00a0\u00bb4.27.8&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb use_background_color_gradient=\u00a0\u00bbon\u00a0\u00bb background_color_gradient_direction=\u00a0\u00bb181deg\u00a0\u00bb background_color_gradient_stops=\u00a0\u00bbrgba(255,255,255,0) 0%|#fdffa3 100%\u00a0\u00bb background_color_gradient_start=\u00a0\u00bbrgba(255,255,255,0)\u00a0\u00bb background_color_gradient_end=\u00a0\u00bb#fdffa3&Prime; custom_padding=\u00a0\u00bb5px||7px|||\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_row column_structure=\u00a0\u00bb3_5,2_5&Prime; _builder_version=\u00a0\u00bb4.27.8&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb background_color=\u00a0\u00bb#FFFFFF\u00a0\u00bb custom_margin=\u00a0\u00bb|auto||auto|false|false\u00a0\u00bb custom_padding=\u00a0\u00bb30px|30px|30px|30px|false|false\u00a0\u00bb border_radii=\u00a0\u00bbon|20px|20px|20px|20px\u00a0\u00bb box_shadow_style=\u00a0\u00bbpreset2&Prime; global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_column type=\u00a0\u00bb3_5&Prime; _builder_version=\u00a0\u00bb4.16&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_image src=\u00a0\u00bbhttp:\/\/www.syndromedemalan.fr\/wp-content\/uploads\/2026\/06\/val2.webp\u00a0\u00bb title_text=\u00a0\u00bbval2&Prime; align=\u00a0\u00bbcenter\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.8&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb width=\u00a0\u00bb20%\u00a0\u00bb width_tablet=\u00a0\u00bb60%\u00a0\u00bb width_phone=\u00a0\u00bb60%\u00a0\u00bb width_last_edited=\u00a0\u00bbon|tablet\u00a0\u00bb module_alignment=\u00a0\u00bbcenter\u00a0\u00bb border_radii=\u00a0\u00bbon|10px|10px|10px|10px\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][\/et_pb_image][et_pb_team_member name=\u00a0\u00bbVal\u00e9rie\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.8&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb header_level=\u00a0\u00bbh3&Prime; header_font=\u00a0\u00bbLora||||||||\u00a0\u00bb header_text_align=\u00a0\u00bbcenter\u00a0\u00bb header_text_color=\u00a0\u00bb#D5783E\u00a0\u00bb header_font_size=\u00a0\u00bb25px\u00a0\u00bb body_text_color=\u00a0\u00bb#0A0000&Prime; background_color=\u00a0\u00bbRGBA(255,255,255,0)\u00a0\u00bb width=\u00a0\u00bb100%\u00a0\u00bb max_width=\u00a0\u00bb100%\u00a0\u00bb custom_margin=\u00a0\u00bb||||false|false\u00a0\u00bb border_radii_image=\u00a0\u00bbon|24px|24px|24px|24px\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb]<\/p>\n<p><strong>Tout a commenc\u00e9 avec une question simple, mais sans r\u00e9ponse : qu\u2019a mon enfant ?<\/strong><br \/>Mon fils est n\u00e9 en 2009. Tr\u00e8s vite, j\u2019ai senti que son d\u00e9veloppement \u00e9tait diff\u00e9rent : retard moteur, difficult\u00e9s de langage, troubles de la praxie\u2026 Comme beaucoup de familles, nous avons cherch\u00e9 des r\u00e9ponses. Et comme beaucoup d\u2019enfants, il a \u00e9t\u00e9 \u201cmis dans une case\u201d : TSA, retard global, retard mental\u2026 faute de diagnostic pr\u00e9cis.<br \/>Des tests g\u00e9n\u00e9tiques sont r\u00e9alis\u00e9s \u00e0 ses 4 ans. Un an d\u2019attente. R\u00e9sultats n\u00e9gatifs. \u00c0 l\u2019\u00e9poque, le Syndrome de Malan, pourtant identifi\u00e9 d\u00e8s 2010, n\u2019est pas recherch\u00e9 : trop rare, trop peu connu en France. On nous demande de revenir\u2026 dix ans plus tard.<br \/>Dix ans sans nom, mais pas sans solutions.<br \/>Car m\u00eame sans diagnostic, mon fils avance. Il est accompagn\u00e9 au CAMPS, au SESSAD puis en lib\u00e9ral en psychomotricit\u00e9, en orthophonie, en ergoth\u00e9rapie. Il suit un parcours scolaire adapt\u00e9, en ULIS puis en IME. Nous avan\u00e7ons, pas \u00e0 pas, avec les moyens du moment.<\/p>\n<p>Puis, dix ans apr\u00e8s, tout bascule.<br \/>Je retrouve le m\u00eame p\u00e9diatre \u00e0 l\u2019IME. Il relance les examens \u00e0 la Timone. Encore de l\u2019attente. Encore des \u00e9preuves, notamment pour mon fils, pour qui l\u2019h\u00f4pital est une source d\u2019angoisse.<\/p>\n<p><strong>Et enfin, la r\u00e9ponse tombe : Syndrome de Malan.<\/strong> Un soulagement. Et en m\u00eame temps, une nouvelle aventure. Car en France, presque rien. Peu d\u2019informations, peu de familles, peu de rep\u00e8res. Alors je me tourne vers les \u00c9tats-Unis, o\u00f9 une fondation existe d\u00e9j\u00e0. Malgr\u00e9 la barri\u00e8re de la langue je prends contact avec la Pr\u00e9sidente Kim. Cette rencontre m\u2019aide \u00e0 mieux comprendre certains sympt\u00f4mes de mon fils, \u00e0 mettre du sens. Puis, j\u2019\u00e9change avec des parents francophones connus de la Foundation. Je ne suis plus seule.<br \/>Quelques mois plus tard, je participe au 1er Congr\u00e8s organis\u00e9 \u00e0 Madrid en 2025 par l\u2019Association espagnole. L\u00e0-bas, des familles, des professionnels, une \u00e9nergie collective. Une preuve que c\u2019est possible.<br \/>Alors je me lance avec d\u2019autres mamans, nous d\u00e9cidons d\u2019agir. De ne plus attendre.<br \/>En d\u00e9cembre 2025, notre association voit le jour. Aujourd\u2019hui, l\u2019histoire continue.<\/p>\n<p><strong>Faire conna\u00eetre le Syndrome de Malan.<\/strong><br \/><strong>Rompre l\u2019isolement.<\/strong><br \/><strong>Soutenir les familles.<\/strong><br \/><strong>Cr\u00e9er du lien.<\/strong><br \/><strong>Faire avancer la recherche.<\/strong><\/p>\n<p>[\/et_pb_team_member][\/et_pb_column][et_pb_column type=\u00a0\u00bb2_5&Prime; _builder_version=\u00a0\u00bb4.27.8&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_team_member _builder_version=\u00a0\u00bb4.27.8&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb header_level=\u00a0\u00bbh3&Prime; header_font=\u00a0\u00bbLora||||||||\u00a0\u00bb header_text_align=\u00a0\u00bbcenter\u00a0\u00bb header_text_color=\u00a0\u00bb#D5783E\u00a0\u00bb header_font_size=\u00a0\u00bb25px\u00a0\u00bb body_text_color=\u00a0\u00bb#0A0000&Prime; background_color=\u00a0\u00bbRGBA(255,255,255,0)\u00a0\u00bb width=\u00a0\u00bb100%\u00a0\u00bb max_width=\u00a0\u00bb100%\u00a0\u00bb custom_margin=\u00a0\u00bb||30px|1px||\u00a0\u00bb border_radii_image=\u00a0\u00bbon|24px|24px|24px|24px\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb]<\/p>\n<p>Parce qu\u2019aucune famille ne devrait rester seule face \u00e0 l\u2019inconnu. Parce que derri\u00e8re chaque diagnostic, il y a une histoire, un enfant, une vie. Et parce que gr\u00e2ce \u00e0 l&rsquo;engagement, des r\u00e9ponses arrivent et donnent un sens \u00e0 ces \u00e9preuves de la vie, qui permettent de mieux les appr\u00e9hender.<\/p>\n<p>[\/et_pb_team_member][et_pb_image src=\u00a0\u00bbhttp:\/\/www.syndromedemalan.fr\/wp-content\/uploads\/2026\/06\/val5.webp\u00a0\u00bb title_text=\u00a0\u00bbval5&Prime; show_in_lightbox=\u00a0\u00bbon\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.8&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb animation_style=\u00a0\u00bbfold\u00a0\u00bb border_radii=\u00a0\u00bbon|20px|20px|20px|20px\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][\/et_pb_image][et_pb_image src=\u00a0\u00bbhttp:\/\/www.syndromedemalan.fr\/wp-content\/uploads\/2026\/09\/simon_piscine.jpg\u00a0\u00bb title_text=\u00a0\u00bbsimon_piscine\u00a0\u00bb show_in_lightbox=\u00a0\u00bbon\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.8&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb animation_style=\u00a0\u00bbfold\u00a0\u00bb border_radii=\u00a0\u00bbon|20px|20px|20px|20px\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][\/et_pb_image][et_pb_image src=\u00a0\u00bbhttp:\/\/www.syndromedemalan.fr\/wp-content\/uploads\/2026\/06\/val4.webp\u00a0\u00bb title_text=\u00a0\u00bbval4&Prime; 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