{"id":306,"date":"2026-07-24T18:20:57","date_gmt":"2026-07-24T18:20:57","guid":{"rendered":"https:\/\/www.syndromedemalan.fr\/?p=306"},"modified":"2026-09-13T09:18:32","modified_gmt":"2026-09-13T09:18:32","slug":"cheminement-simon-congres-syndrome-malan","status":"publish","type":"post","link":"https:\/\/www.syndromedemalan.fr\/index.php\/2026\/07\/24\/cheminement-simon-congres-syndrome-malan\/","title":{"rendered":"Congres Syndrome de Malan 2026 : Le voyage de Simon"},"content":{"rendered":"

[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 column_structure=\u00a0\u00bb1_2,1_2″ 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\u00bb1_2″ _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_image src=\u00a0\u00bbhttp:\/\/www.syndromedemalan.fr\/wp-content\/uploads\/2026\/06\/val5.webp\u00a0\u00bb title_text=\u00a0\u00bbval5″ _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_column type=\u00a0\u00bb1_2″ _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]<\/p>\n

En juin dernier s’est tenu le 2\u00e8me congr\u00e8s international sur le Syndrome de Malan<\/a>, organis\u00e9 par l\u2019association espagnole. \ud83c\uddea\ud83c\uddf8\u2728<\/p>\n

Pour moi, c\u2019\u00e9tait l\u2019occasion de retrouver ces familles formidables que j\u2019avais eu la chance de rencontrer en 2025 lors de la premi\u00e8re \u00e9dition. Mais cette ann\u00e9e, ce voyage avait une saveur toute particuli\u00e8re\u2026 \ud83d\udc99
J\u2019ai voulu que mon mari et mon fils, Simon (diagnostiqu\u00e9 en juillet 2024), soient du voyage. Je souhaitais de tout c\u0153ur qu’ils puissent, eux aussi, rencontrer d\u2019autres familles et d\u2019autres enfants porteurs du syndrome.<\/p>\n

Cette journ\u00e9e a \u00e9t\u00e9 d\u2019une immense richesse :<\/strong>
\ud83d\udd2c Nous avons assist\u00e9 au colloque et rencontr\u00e9 les professionnels de sant\u00e9 qui font avancer la recherche.
\ud83d\udcac Nous avons partag\u00e9, \u00e9chang\u00e9 et cr\u00e9\u00e9 des liens pr\u00e9cieux avec d’autres parents.
\ud83e\uddd2 Nos enfants ont pu se rencontrer.
Pour Simon, voir d\u2019autres enfants \u00ab comme lui \u00bb a \u00e9t\u00e9 une \u00e9tape difficile, remplie d’\u00e9motions. C’est un cheminement qui prend du temps, mais ce pas en avant est si important. \ud83e\ude79\u2728<\/p>\n

Un immense merci \u00e0 l’association pour l’organisation de cet \u00e9v\u00e9nement qui nous permet de nous sentir moins seuls et plus forts, ensemble. \ud83e\udd1d<\/p>\n

Val\u00e9rie<\/p>\n

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En juin dernier s’est tenu le 2\u00e8me congr\u00e8s international sur le Syndrome de Malan, organis\u00e9 par l\u2019association espagnole. \ud83c\uddea\ud83c\uddf8\u2728 Pour moi, c\u2019\u00e9tait l\u2019occasion de retrouver ces familles formidables que j\u2019avais eu la chance de rencontrer en 2025 lors de la premi\u00e8re \u00e9dition. Mais cette ann\u00e9e, ce voyage avait une saveur toute particuli\u00e8re\u2026 \ud83d\udc99J\u2019ai voulu que […]<\/p>\n","protected":false},"author":1,"featured_media":246,"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-306","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-actu"],"yoast_head":"\nCongres Syndrome de Malan 2026 : Le voyage de Simon - 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\/cheminement-simon-congres-syndrome-malan\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Congres Syndrome de Malan 2026 : Le voyage de Simon - Asso Syndrome Malan\" \/>\n<meta property=\"og:description\" content=\"En juin dernier s'est tenu le 2\u00e8me congr\u00e8s international sur le Syndrome de Malan, organis\u00e9 par l\u2019association espagnole. \ud83c\uddea\ud83c\uddf8\u2728 Pour moi, c\u2019\u00e9tait l\u2019occasion de retrouver ces familles formidables que j\u2019avais eu la chance de rencontrer en 2025 lors de la premi\u00e8re \u00e9dition. 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