{"id":6786,"date":"2025-06-25T10:42:52","date_gmt":"2025-06-25T10:42:52","guid":{"rendered":"https:\/\/cureclcn4.org\/conference-scientifique-cure-clcn4-points-forts-pour-les-familles\/"},"modified":"2025-06-25T10:42:53","modified_gmt":"2025-06-25T10:42:53","slug":"conference-scientifique-cure-clcn4-points-forts-pour-les-familles","status":"publish","type":"post","link":"https:\/\/cureclcn4.org\/fr\/conference-scientifique-cure-clcn4-points-forts-pour-les-familles\/","title":{"rendered":"Conf\u00e9rence scientifique Cure CLCN4 &#8211; Points forts pour les familles"},"content":{"rendered":"<p>[et_pb_section fb_built=\u00a0\u00bb1&Prime; admin_label=\u00a0\u00bbGet Involved\u00a0\u00bb _builder_version=\u00a0\u00bb4.24.2&Prime; background_color=\u00a0\u00bb#FFFFFF\u00a0\u00bb background_image=\u00a0\u00bbhttps:\/\/cureclcn4.org\/wp-content\/uploads\/2020\/08\/charity-13.png\u00a0\u00bb parallax=\u00a0\u00bbon\u00a0\u00bb width=\u00a0\u00bb100%\u00a0\u00bb 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text_line_height=\u00a0\u00bb2em\u00a0\u00bb header_font=\u00a0\u00bbFaustina|600|||||||\u00a0\u00bb header_text_color=\u00a0\u00bb#0e7162&Prime; header_font_size=\u00a0\u00bb57px\u00a0\u00bb header_line_height=\u00a0\u00bb1.3em\u00a0\u00bb width=\u00a0\u00bb94.4%\u00a0\u00bb min_height=\u00a0\u00bb83px\u00a0\u00bb custom_margin=\u00a0\u00bb-19px|||19px|false|false\u00a0\u00bb header_font_size_tablet=\u00a0\u00bb50px\u00a0\u00bb header_font_size_phone=\u00a0\u00bb40px\u00a0\u00bb header_font_size_last_edited=\u00a0\u00bbon|phone\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb]<\/p>\n<h1 style=\"text-align: center;\"><\/h1>\n<h1 style=\"text-align: center;\">Conf\u00e9rence scientifique Cure CLCN4 &#8211; Points forts pour les familles<\/h1>\n<p>[\/et_pb_text][et_pb_image src=\u00a0\u00bbhttps:\/\/cureclcn4.org\/wp-content\/uploads\/2025\/06\/04258F6F-F016-42AE-9A6D-75C73A4A5351_1_105_c-copy.jpeg\u00a0\u00bb title_text=\u00a0\u00bb04258F6F-F016-42AE-9A6D-75C73A4A5351_1_105_c copy\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.4&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][\/et_pb_image][et_pb_text _builder_version=\u00a0\u00bb4.27.4&Prime; text_font=\u00a0\u00bb||||||||\u00a0\u00bb text_font_size=\u00a0\u00bb20px\u00a0\u00bb text_line_height=\u00a0\u00bb2em\u00a0\u00bb header_font=\u00a0\u00bbFaustina||||||||\u00a0\u00bb header_text_color=\u00a0\u00bb#0e7162&Prime; header_font_size=\u00a0\u00bb60px\u00a0\u00bb header_line_height=\u00a0\u00bb1.3em\u00a0\u00bb text_orientation=\u00a0\u00bbjustified\u00a0\u00bb min_height=\u00a0\u00bb52px\u00a0\u00bb custom_margin=\u00a0\u00bb|5px||5px|false|true\u00a0\u00bb custom_padding=\u00a0\u00bb|10px||10px|false|true\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb]<\/p>\n<p style=\"font-weight: 400;\"><span>Nous avons r\u00e9cemment r\u00e9uni des scientifiques et des cliniciens de premier plan pour partager les derni\u00e8res recherches et id\u00e9es afin de mieux comprendre les troubles <em>li\u00e9s \u00e0 la CLCN4<\/em>. <\/span><span>Voici les principaux enseignements de la conf\u00e9rence, en langage clair :<\/span><\/p>\n<p style=\"text-align: center;\">[\/et_pb_text][et_pb_divider color=\u00a0\u00bb#12876f\u00a0\u00bb divider_weight=\u00a0\u00bb5px\u00a0\u00bb _builder_version=\u00a0\u00bb4.25.0&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb min_height=\u00a0\u00bb6px\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][\/et_pb_divider][\/et_pb_column][\/et_pb_row][et_pb_row _builder_version=\u00a0\u00bb4.27.4&Prime; background_color=\u00a0\u00bb#ffffff\u00a0\u00bb width=\u00a0\u00bb100%\u00a0\u00bb max_width=\u00a0\u00bb1090px\u00a0\u00bb min_height=\u00a0\u00bb41px\u00a0\u00bb custom_margin=\u00a0\u00bb10px||10px||false|false\u00a0\u00bb custom_padding=\u00a0\u00bb0px||0px||false|false\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_column type=\u00a0\u00bb4_4&Prime; admin_label=\u00a0\u00bbColonne\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.4&Prime; custom_padding=\u00a0\u00bb0px||0px||false|false\u00a0\u00bb custom_padding_tablet=\u00a0\u00bb0px||\u00a0\u00bb custom_padding_phone=\u00a0\u00bb\u00a0\u00bb custom_padding_last_edited=\u00a0\u00bbon|desktop\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb padding_tablet=\u00a0\u00bb0px||\u00a0\u00bb padding_last_edited=\u00a0\u00bbon|tablet\u00a0\u00bb custom_padding__hover=\u00a0\u00bb|||\u00a0\u00bb padding_phone=\u00a0\u00bb0px||\u00a0\u00bb][et_pb_text _builder_version=\u00a0\u00bb4.27.4&Prime; text_font=\u00a0\u00bb||||||||\u00a0\u00bb text_font_size=\u00a0\u00bb20px\u00a0\u00bb text_line_height=\u00a0\u00bb2em\u00a0\u00bb header_font=\u00a0\u00bbFaustina|600|||||||\u00a0\u00bb header_text_color=\u00a0\u00bb#0e7162&Prime; header_font_size=\u00a0\u00bb60px\u00a0\u00bb header_line_height=\u00a0\u00bb1.3em\u00a0\u00bb header_2_font=\u00a0\u00bb|700|||||||\u00a0\u00bb header_2_text_color=\u00a0\u00bb#0e7162&Prime; header_2_font_size=\u00a0\u00bb30px\u00a0\u00bb text_orientation=\u00a0\u00bbcenter\u00a0\u00bb module_alignment=\u00a0\u00bbcenter\u00a0\u00bb min_height=\u00a0\u00bb41px\u00a0\u00bb custom_margin=\u00a0\u00bb||0px|0px|false|false\u00a0\u00bb custom_padding=\u00a0\u00bb|25px|0px|25px|false|false\u00a0\u00bb header_font_size_tablet=\u00a0\u00bb50px\u00a0\u00bb header_font_size_phone=\u00a0\u00bb40px\u00a0\u00bb header_font_size_last_edited=\u00a0\u00bbon|phone\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb]<\/p>\n<h2 style=\"text-align: left;\">Ce que nous apprenons sur le g\u00e8ne <em>CLCN4<\/em> <\/h2>\n<p>[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=\u00a0\u00bb1_2,1_2&Prime; _builder_version=\u00a0\u00bb4.27.4&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb background_color=\u00a0\u00bb#FFFFFF\u00a0\u00bb width=\u00a0\u00bb100%\u00a0\u00bb min_height=\u00a0\u00bb376px\u00a0\u00bb custom_margin=\u00a0\u00bb0px||0px||false|false\u00a0\u00bb custom_padding=\u00a0\u00bb0px|0px|0px||false|false\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_column type=\u00a0\u00bb1_2&Prime; _builder_version=\u00a0\u00bb4.27.4&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb custom_padding=\u00a0\u00bb0px||0px||false|false\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_text _builder_version=\u00a0\u00bb4.27.4&Prime; text_font=\u00a0\u00bb||||||||\u00a0\u00bb text_font_size=\u00a0\u00bb16px\u00a0\u00bb text_line_height=\u00a0\u00bb2em\u00a0\u00bb header_font=\u00a0\u00bbFaustina||||||||\u00a0\u00bb header_text_color=\u00a0\u00bb#0e7162&Prime; header_font_size=\u00a0\u00bb60px\u00a0\u00bb header_line_height=\u00a0\u00bb1.3em\u00a0\u00bb text_orientation=\u00a0\u00bbjustified\u00a0\u00bb min_height=\u00a0\u00bb328px\u00a0\u00bb custom_margin=\u00a0\u00bb10px|5px|0px|5px|false|true\u00a0\u00bb custom_padding=\u00a0\u00bb0px|10px|0px|10px|false|false\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb]<\/p>\n<ul>\n<li>L&rsquo;affection <em>li\u00e9e au CLCN4<\/em> est caus\u00e9e par des variantes ou des \u00ab\u00a0changements\u00a0\u00bb dans le g\u00e8ne <em>CLCN4<\/em>. Le g\u00e8ne <em>CLCN4<\/em> donne des instructions pour la fabrication d&rsquo;une prot\u00e9ine appel\u00e9e ClC-4. On pense que cette prot\u00e9ine joue un r\u00f4le important dans le <strong>fonctionnement du cerveau et des cellules nerveuses.<\/strong>  <\/li>\n<li><strong>Les modifications du g\u00e8ne <em>CLCN4<\/em> affectent le fonctionnement de la prot\u00e9ine ClC-4<\/strong> \u00e0 l&rsquo;int\u00e9rieur des cellules de l&rsquo;organisme d&rsquo;une personne atteinte.<\/li>\n<li>La recherche confirme que <strong>ClC-4 travaille en \u00e9troite collaboration avec une \u00ab\u00a0prot\u00e9ine partenaire\u00a0\u00bb appel\u00e9e ClC-3<\/strong>, et que si l&rsquo;une ne fonctionne pas correctement, l&rsquo;autre peut essayer de compenser.<\/li>\n<li>De <strong>nouvelles prot\u00e9ines partenaires<\/strong> (appel\u00e9es TMEM9A et TMEM9B) ont \u00e9galement \u00e9t\u00e9 d\u00e9couvertes r\u00e9cemment. Elles pourraient contribuer \u00e0 contr\u00f4ler le fonctionnement de ClC-4 dans le cerveau et constituer de nouvelles cibles pour de futurs traitements. <\/li>\n<\/ul>\n<p>[\/et_pb_text][\/et_pb_column][et_pb_column type=\u00a0\u00bb1_2&Prime; _builder_version=\u00a0\u00bb4.27.4&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb custom_padding=\u00a0\u00bb0px||0px||false|false\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_image src=\u00a0\u00bbhttps:\/\/cureclcn4.org\/wp-content\/uploads\/2025\/06\/1.png\u00a0\u00bb title_text=\u00a0\u00bbADN\u00a0\u00bb align=\u00a0\u00bbcenter\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.4&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb max_width=\u00a0\u00bb75%\u00a0\u00bb custom_margin=\u00a0\u00bb0px||||false|false\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][\/et_pb_image][\/et_pb_column][\/et_pb_row][et_pb_row _builder_version=\u00a0\u00bb4.27.4&Prime; background_color=\u00a0\u00bb#ffffff\u00a0\u00bb width=\u00a0\u00bb100%\u00a0\u00bb max_width=\u00a0\u00bb1100px\u00a0\u00bb min_height=\u00a0\u00bb70px\u00a0\u00bb height=\u00a0\u00bb100px\u00a0\u00bb custom_margin=\u00a0\u00bb10px||5px||false|false\u00a0\u00bb custom_padding=\u00a0\u00bb0px||0px||false|false\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_column type=\u00a0\u00bb4_4&Prime; _builder_version=\u00a0\u00bb4.27.4&Prime; custom_padding=\u00a0\u00bb0px||0px||false|false\u00a0\u00bb custom_padding_tablet=\u00a0\u00bb0px||\u00a0\u00bb custom_padding_phone=\u00a0\u00bb\u00a0\u00bb custom_padding_last_edited=\u00a0\u00bbon|desktop\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb padding_tablet=\u00a0\u00bb0px||\u00a0\u00bb padding_last_edited=\u00a0\u00bbon|tablet\u00a0\u00bb custom_padding__hover=\u00a0\u00bb|||\u00a0\u00bb padding_phone=\u00a0\u00bb0px||\u00a0\u00bb][et_pb_text _builder_version=\u00a0\u00bb4.27.4&Prime; text_font=\u00a0\u00bb||||||||\u00a0\u00bb text_font_size=\u00a0\u00bb20px\u00a0\u00bb text_line_height=\u00a0\u00bb2em\u00a0\u00bb header_font=\u00a0\u00bbFaustina|600|||||||\u00a0\u00bb header_text_color=\u00a0\u00bb#0e7162&Prime; header_font_size=\u00a0\u00bb60px\u00a0\u00bb header_line_height=\u00a0\u00bb1.3em\u00a0\u00bb header_2_font=\u00a0\u00bb|700|||||||\u00a0\u00bb header_2_text_color=\u00a0\u00bb#0e7162&Prime; header_2_font_size=\u00a0\u00bb30px\u00a0\u00bb text_orientation=\u00a0\u00bbcenter\u00a0\u00bb width=\u00a0\u00bb92.2%\u00a0\u00bb min_height=\u00a0\u00bb87px\u00a0\u00bb height=\u00a0\u00bb100px\u00a0\u00bb max_height=\u00a0\u00bb1000px\u00a0\u00bb custom_margin=\u00a0\u00bb0px|19px|0px|19px|false|false\u00a0\u00bb custom_padding=\u00a0\u00bb0px||0px||false|false\u00a0\u00bb header_font_size_tablet=\u00a0\u00bb50px\u00a0\u00bb header_font_size_phone=\u00a0\u00bb40px\u00a0\u00bb header_font_size_last_edited=\u00a0\u00bbon|phone\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb]<\/p>\n<h2 style=\"text-align: left;\">Les mod\u00e8les animaux peuvent nous aider \u00e0 mieux comprendre les troubles <em>li\u00e9s \u00e0 la CLCN4<\/em><\/h2>\n<p>[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=\u00a0\u00bb1_2,1_2&Prime; _builder_version=\u00a0\u00bb4.27.4&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb background_color=\u00a0\u00bb#FFFFFF\u00a0\u00bb width=\u00a0\u00bb100%\u00a0\u00bb min_height=\u00a0\u00bb346px\u00a0\u00bb custom_margin=\u00a0\u00bb0px||0px||false|false\u00a0\u00bb custom_padding=\u00a0\u00bb0px|0px|0px||false|false\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_column type=\u00a0\u00bb1_2&Prime; _builder_version=\u00a0\u00bb4.27.4&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb custom_padding=\u00a0\u00bb0px||0px||false|false\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_text _builder_version=\u00a0\u00bb4.27.4&Prime; text_font=\u00a0\u00bb||||||||\u00a0\u00bb text_font_size=\u00a0\u00bb16px\u00a0\u00bb text_line_height=\u00a0\u00bb2em\u00a0\u00bb header_font=\u00a0\u00bbFaustina||||||||\u00a0\u00bb header_text_color=\u00a0\u00bb#0e7162&Prime; header_font_size=\u00a0\u00bb60px\u00a0\u00bb header_line_height=\u00a0\u00bb1.3em\u00a0\u00bb text_orientation=\u00a0\u00bbjustified\u00a0\u00bb min_height=\u00a0\u00bb343px\u00a0\u00bb custom_margin=\u00a0\u00bb5px|5px|0px|5px|false|true\u00a0\u00bb custom_padding=\u00a0\u00bb0px|10px|0px|10px|false|false\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb]<\/p>\n<ul style=\"font-weight: 400;\">\n<li><span>Les <strong>mod\u00e8les<em>Clcn4-rat<\/em> <\/strong>r\u00e9cemment d\u00e9velopp\u00e9s pr\u00e9sentent des sympt\u00f4mes similaires \u00e0 ceux observ\u00e9s chez certains patients, tels que l&rsquo;<strong>hyperactivit\u00e9, des difficult\u00e9s d&rsquo;attention et des probl\u00e8mes de coordination<\/strong>. Les premiers r\u00e9sultats indiquent \u00e9galement des probl\u00e8mes d&rsquo;apprentissage et de m\u00e9moire, mais des travaux suppl\u00e9mentaires sont n\u00e9cessaires pour les confirmer.   <\/span><\/li>\n<li><span>Les scientifiques tentent \u00e9galement de d\u00e9velopper un <strong>mod\u00e8le de poisson z\u00e8bre<\/strong> <em>CLCN4<\/em>afin de mieux comprendre la maladie <em>li\u00e9e \u00e0 CLCN4<\/em>. Le poisson z\u00e8bre est transparent, se d\u00e9veloppe rapidement et est moins cher \u00e0 entretenir que les rongeurs, ce qui pourrait aider les chercheurs \u00e0 passer au crible des centaines de m\u00e9dicaments pour trouver ceux qui pourraient \u00eatre utiles. Ces animaux aident d\u00e9j\u00e0 \u00e0 trouver des traitements pour des maladies similaires, telles que les syndromes de Batten et de Dravet.  <\/span><\/li>\n<\/ul>\n<p>[\/et_pb_text][\/et_pb_column][et_pb_column type=\u00a0\u00bb1_2&Prime; _builder_version=\u00a0\u00bb4.27.4&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb custom_padding=\u00a0\u00bb0px||0px||false|false\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_image src=\u00a0\u00bbhttps:\/\/cureclcn4.org\/wp-content\/uploads\/2025\/06\/2.png\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.4&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb title_text=\u00a0\u00bbMod\u00e8le animal\u00a0\u00bb max_width=\u00a0\u00bb75%\u00a0\u00bb align=\u00a0\u00bbcenter\u00a0\u00bb hover_enabled=\u00a0\u00bb0&Prime; sticky_enabled=\u00a0\u00bb0&Prime;][\/et_pb_image][\/et_pb_column][\/et_pb_row][et_pb_row _builder_version=\u00a0\u00bb4.27.4&Prime; background_color=\u00a0\u00bb#ffffff\u00a0\u00bb width=\u00a0\u00bb100%\u00a0\u00bb max_width=\u00a0\u00bb1100px\u00a0\u00bb min_height=\u00a0\u00bb38px\u00a0\u00bb custom_margin=\u00a0\u00bb10px|auto|10px|auto|false|false\u00a0\u00bb custom_padding=\u00a0\u00bb0px||0px||false|false\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_column type=\u00a0\u00bb4_4&Prime; _builder_version=\u00a0\u00bb4.27.4&Prime; custom_padding=\u00a0\u00bb0px||0px||false|false\u00a0\u00bb custom_padding_tablet=\u00a0\u00bb0px||\u00a0\u00bb custom_padding_phone=\u00a0\u00bb\u00a0\u00bb custom_padding_last_edited=\u00a0\u00bbon|desktop\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb padding_tablet=\u00a0\u00bb0px||\u00a0\u00bb padding_last_edited=\u00a0\u00bbon|tablet\u00a0\u00bb custom_padding__hover=\u00a0\u00bb|||\u00a0\u00bb padding_phone=\u00a0\u00bb0px||\u00a0\u00bb][et_pb_text _builder_version=\u00a0\u00bb4.27.4&Prime; text_font=\u00a0\u00bb||||||||\u00a0\u00bb text_font_size=\u00a0\u00bb20px\u00a0\u00bb text_line_height=\u00a0\u00bb2em\u00a0\u00bb header_font=\u00a0\u00bbFaustina|600|||||||\u00a0\u00bb header_text_color=\u00a0\u00bb#0e7162&Prime; header_font_size=\u00a0\u00bb60px\u00a0\u00bb header_line_height=\u00a0\u00bb1.3em\u00a0\u00bb header_2_font=\u00a0\u00bb|700|||||||\u00a0\u00bb header_2_text_color=\u00a0\u00bb#0e7162&Prime; header_2_font_size=\u00a0\u00bb30px\u00a0\u00bb text_orientation=\u00a0\u00bbcenter\u00a0\u00bb width=\u00a0\u00bb92.2%\u00a0\u00bb min_height=\u00a0\u00bb40px\u00a0\u00bb custom_margin=\u00a0\u00bb0px|10px|0px|10px|false|false\u00a0\u00bb custom_padding=\u00a0\u00bb0px||0px||false|false\u00a0\u00bb header_font_size_tablet=\u00a0\u00bb50px\u00a0\u00bb header_font_size_phone=\u00a0\u00bb40px\u00a0\u00bb header_font_size_last_edited=\u00a0\u00bbon|phone\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb]<\/p>\n<h2 style=\"text-align: left;\">\u00c9tude des variantes de <em>la CLCN4<\/em> <\/h2>\n<p>[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=\u00a0\u00bb1_2,1_2&Prime; _builder_version=\u00a0\u00bb4.27.4&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb background_color=\u00a0\u00bb#FFFFFF\u00a0\u00bb width=\u00a0\u00bb100%\u00a0\u00bb min_height=\u00a0\u00bb202px\u00a0\u00bb custom_margin=\u00a0\u00bb0px||0px||false|false\u00a0\u00bb custom_padding=\u00a0\u00bb0px||0px||false|false\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_column type=\u00a0\u00bb1_2&Prime; _builder_version=\u00a0\u00bb4.27.4&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb custom_padding=\u00a0\u00bb0px||0px||false|false\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_text _builder_version=\u00a0\u00bb4.27.4&Prime; text_font=\u00a0\u00bb||||||||\u00a0\u00bb text_font_size=\u00a0\u00bb16px\u00a0\u00bb text_line_height=\u00a0\u00bb2em\u00a0\u00bb header_font=\u00a0\u00bbFaustina||||||||\u00a0\u00bb header_text_color=\u00a0\u00bb#0e7162&Prime; header_font_size=\u00a0\u00bb60px\u00a0\u00bb header_line_height=\u00a0\u00bb1.3em\u00a0\u00bb text_orientation=\u00a0\u00bbjustified\u00a0\u00bb custom_margin=\u00a0\u00bb0px|5px|0px|5px|false|true\u00a0\u00bb custom_padding=\u00a0\u00bb0px|10px|0px|10px|false|true\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb]<\/p>\n<ul>\n<li>Toutes les modifications g\u00e9n\u00e9tiques (variantes) du g\u00e8ne <em>CLCN4<\/em> ne conduisent pas \u00e0 une maladie <em>li\u00e9e au CLCN4<\/em>. Il existe de nombreuses personnes saines et non affect\u00e9es qui pr\u00e9sentent des variantes du g\u00e8ne <em>CLCN4<\/em> et dont la prot\u00e9ine ClC-4 fonctionne parfaitement. <\/li>\n<li>Des travaux sont en cours pour <strong>comprendre quelles variantes sont les plus susceptibles de provoquer des sympt\u00f4mes<\/strong> et comment elles peuvent affecter les fonctions c\u00e9r\u00e9brales.<\/li>\n<li>Ces travaux sont importants pour aider \u00e0 <strong>classer les nouvelles variantes<\/strong>, <strong>faciliter le diagnostic<\/strong> et <strong>orienter les<\/strong> d\u00e9cisions <strong>th\u00e9rapeutiques<\/strong> \u00e0 l&rsquo;avenir.<\/li>\n<\/ul>\n<p>[\/et_pb_text][\/et_pb_column][et_pb_column type=\u00a0\u00bb1_2&Prime; _builder_version=\u00a0\u00bb4.27.4&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb custom_padding=\u00a0\u00bb0px||0px||false|false\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_image src=\u00a0\u00bbhttps:\/\/cureclcn4.org\/wp-content\/uploads\/2025\/06\/3.png\u00a0\u00bb title_text=\u00a0\u00bbChercheur\u00a0\u00bb align=\u00a0\u00bbcenter\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.4&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb max_width=\u00a0\u00bb75%\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][\/et_pb_image][\/et_pb_column][\/et_pb_row][et_pb_row _builder_version=\u00a0\u00bb4.27.4&Prime; background_color=\u00a0\u00bb#ffffff\u00a0\u00bb width=\u00a0\u00bb100%\u00a0\u00bb max_width=\u00a0\u00bb1100px\u00a0\u00bb min_height=\u00a0\u00bb31px\u00a0\u00bb custom_margin=\u00a0\u00bb10px||10px||false|false\u00a0\u00bb custom_padding=\u00a0\u00bb0px||0px||false|false\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_column type=\u00a0\u00bb4_4&Prime; _builder_version=\u00a0\u00bb4.27.4&Prime; custom_padding=\u00a0\u00bb0px||0px||false|false\u00a0\u00bb custom_padding_tablet=\u00a0\u00bb0px||\u00a0\u00bb custom_padding_phone=\u00a0\u00bb\u00a0\u00bb custom_padding_last_edited=\u00a0\u00bbon|desktop\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb padding_tablet=\u00a0\u00bb0px||\u00a0\u00bb padding_last_edited=\u00a0\u00bbon|tablet\u00a0\u00bb custom_padding__hover=\u00a0\u00bb|||\u00a0\u00bb padding_phone=\u00a0\u00bb0px||\u00a0\u00bb][et_pb_text _builder_version=\u00a0\u00bb4.27.4&Prime; text_font=\u00a0\u00bb||||||||\u00a0\u00bb text_font_size=\u00a0\u00bb20px\u00a0\u00bb text_line_height=\u00a0\u00bb2em\u00a0\u00bb header_font=\u00a0\u00bbFaustina|600|||||||\u00a0\u00bb header_text_color=\u00a0\u00bb#0e7162&Prime; header_font_size=\u00a0\u00bb60px\u00a0\u00bb header_line_height=\u00a0\u00bb1.3em\u00a0\u00bb header_2_font=\u00a0\u00bb|700|||||||\u00a0\u00bb header_2_text_color=\u00a0\u00bb#0e7162&Prime; header_2_font_size=\u00a0\u00bb30px\u00a0\u00bb text_orientation=\u00a0\u00bbcenter\u00a0\u00bb width=\u00a0\u00bb92.2%\u00a0\u00bb min_height=\u00a0\u00bb26px\u00a0\u00bb custom_margin=\u00a0\u00bb0px|19px|0px|19px|false|false\u00a0\u00bb custom_padding=\u00a0\u00bb0px||0px||false|false\u00a0\u00bb header_font_size_tablet=\u00a0\u00bb50px\u00a0\u00bb header_font_size_phone=\u00a0\u00bb40px\u00a0\u00bb header_font_size_last_edited=\u00a0\u00bbon|phone\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb]<\/p>\n<h2 style=\"text-align: left;\">Le c\u00f4t\u00e9 humain : plus qu&rsquo;un diagnostic<\/h2>\n<p>[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=\u00a0\u00bb1_2,1_2&Prime; _builder_version=\u00a0\u00bb4.27.4&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb background_color=\u00a0\u00bb#FFFFFF\u00a0\u00bb width=\u00a0\u00bb100%\u00a0\u00bb min_height=\u00a0\u00bb259px\u00a0\u00bb custom_margin=\u00a0\u00bb10px|auto|10px|auto|false|false\u00a0\u00bb custom_padding=\u00a0\u00bb0px|0px|10px||false|false\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_column type=\u00a0\u00bb1_2&Prime; _builder_version=\u00a0\u00bb4.27.4&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb custom_padding=\u00a0\u00bb0px||0px||false|false\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_text _builder_version=\u00a0\u00bb4.27.4&Prime; text_font=\u00a0\u00bb||||||||\u00a0\u00bb text_font_size=\u00a0\u00bb16px\u00a0\u00bb text_line_height=\u00a0\u00bb2em\u00a0\u00bb header_font=\u00a0\u00bbFaustina||||||||\u00a0\u00bb header_text_color=\u00a0\u00bb#0e7162&Prime; header_font_size=\u00a0\u00bb60px\u00a0\u00bb header_line_height=\u00a0\u00bb1.3em\u00a0\u00bb text_orientation=\u00a0\u00bbjustified\u00a0\u00bb min_height=\u00a0\u00bb239px\u00a0\u00bb custom_margin=\u00a0\u00bb10px|5px|0px|5px|false|true\u00a0\u00bb custom_padding=\u00a0\u00bb0px|10px|0px|10px|false|false\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb]<\/p>\n<ul>\n<li>L&rsquo;affection <em>li\u00e9e \u00e0 la CLCN4<\/em> n&rsquo;est pas une seule affection, mais un groupe d&rsquo;exp\u00e9riences li\u00e9es. Il s&rsquo;agit d&rsquo;une maladie neurod\u00e9veloppementale pr\u00e9sentant un <strong>large \u00e9ventail de sympt\u00f4mes<\/strong>, notamment des difficult\u00e9s d&rsquo;apprentissage, des probl\u00e8mes de communication, l&rsquo;\u00e9pilepsie et des diff\u00e9rences de mouvement ou de comportement. <\/li>\n<li>La <strong>gravit\u00e9 et les caract\u00e9ristiques sp\u00e9cifiques peuvent varier de mani\u00e8re significative<\/strong>, m\u00eame entre les individus d&rsquo;une m\u00eame famille.<\/li>\n<li>Ce que toutes les personnes atteintes d&rsquo;un trouble <em>li\u00e9 \u00e0 la CLCN4<\/em> ont en commun, c&rsquo;est une <strong>r\u00e9silience extraordinaire<\/strong>, de l&rsquo;<strong>empathie<\/strong> et la capacit\u00e9 d&rsquo;apporter de l&rsquo;<strong>amour et de cr\u00e9er des liens avec<\/strong> ceux qui les entourent.<\/li>\n<\/ul>\n<p>[\/et_pb_text][\/et_pb_column][et_pb_column type=\u00a0\u00bb1_2&Prime; _builder_version=\u00a0\u00bb4.27.4&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb custom_padding=\u00a0\u00bb0px||0px||false|false\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_image src=\u00a0\u00bbhttps:\/\/cureclcn4.org\/wp-content\/uploads\/2025\/06\/4.png\u00a0\u00bb title_text=\u00a0\u00bbUn enfant heureux\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.4&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb max_width=\u00a0\u00bb75%\u00a0\u00bb custom_margin=\u00a0\u00bb0px|0px|0px|0px|false|false\u00a0\u00bb hover_enabled=\u00a0\u00bb0&Prime; global_colors_info=\u00a0\u00bb{}\u00a0\u00bb align=\u00a0\u00bbcenter\u00a0\u00bb sticky_enabled=\u00a0\u00bb0&Prime; module_alignment=\u00a0\u00bbcenter\u00a0\u00bb][\/et_pb_image][\/et_pb_column][\/et_pb_row][et_pb_row _builder_version=\u00a0\u00bb4.27.4&Prime; background_color=\u00a0\u00bb#ffffff\u00a0\u00bb width=\u00a0\u00bb100%\u00a0\u00bb max_width=\u00a0\u00bb1100px\u00a0\u00bb min_height=\u00a0\u00bb46px\u00a0\u00bb custom_margin=\u00a0\u00bb10px||10px||false|false\u00a0\u00bb custom_padding=\u00a0\u00bb0px||0px||false|false\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_column type=\u00a0\u00bb4_4&Prime; _builder_version=\u00a0\u00bb4.27.4&Prime; custom_padding=\u00a0\u00bb0px||0px||false|false\u00a0\u00bb custom_padding_tablet=\u00a0\u00bb0px||\u00a0\u00bb custom_padding_phone=\u00a0\u00bb\u00a0\u00bb custom_padding_last_edited=\u00a0\u00bbon|desktop\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb padding_tablet=\u00a0\u00bb0px||\u00a0\u00bb padding_last_edited=\u00a0\u00bbon|tablet\u00a0\u00bb custom_padding__hover=\u00a0\u00bb|||\u00a0\u00bb padding_phone=\u00a0\u00bb0px||\u00a0\u00bb][et_pb_text _builder_version=\u00a0\u00bb4.27.4&Prime; text_font=\u00a0\u00bb||||||||\u00a0\u00bb text_font_size=\u00a0\u00bb20px\u00a0\u00bb text_line_height=\u00a0\u00bb2em\u00a0\u00bb header_font=\u00a0\u00bbFaustina|600|||||||\u00a0\u00bb header_text_color=\u00a0\u00bb#0e7162&Prime; header_font_size=\u00a0\u00bb60px\u00a0\u00bb header_line_height=\u00a0\u00bb1.3em\u00a0\u00bb header_2_font=\u00a0\u00bb|700|||||||\u00a0\u00bb header_2_text_color=\u00a0\u00bb#0e7162&Prime; header_2_font_size=\u00a0\u00bb30px\u00a0\u00bb text_orientation=\u00a0\u00bbcenter\u00a0\u00bb width=\u00a0\u00bb92.2%\u00a0\u00bb min_height=\u00a0\u00bb26px\u00a0\u00bb custom_margin=\u00a0\u00bb0px|19px|0px|19px|false|false\u00a0\u00bb custom_padding=\u00a0\u00bb0px||0px||false|false\u00a0\u00bb header_font_size_tablet=\u00a0\u00bb50px\u00a0\u00bb header_font_size_phone=\u00a0\u00bb40px\u00a0\u00bb header_font_size_last_edited=\u00a0\u00bbon|phone\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb]<\/p>\n<h2 style=\"text-align: left;\">Le potentiel des th\u00e9rapies g\u00e9n\u00e9tiques<\/h2>\n<p>[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=\u00a0\u00bb1_2,1_2&Prime; _builder_version=\u00a0\u00bb4.27.4&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb background_color=\u00a0\u00bb#FFFFFF\u00a0\u00bb width=\u00a0\u00bb100%\u00a0\u00bb min_height=\u00a0\u00bb282px\u00a0\u00bb custom_margin=\u00a0\u00bb0px|auto|0px|auto|false|false\u00a0\u00bb custom_padding=\u00a0\u00bb0px|0px|0px||false|false\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_column type=\u00a0\u00bb1_2&Prime; _builder_version=\u00a0\u00bb4.27.4&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb custom_padding=\u00a0\u00bb0px||0px||false|false\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_text _builder_version=\u00a0\u00bb4.27.4&Prime; text_font=\u00a0\u00bb||||||||\u00a0\u00bb text_font_size=\u00a0\u00bb16px\u00a0\u00bb text_line_height=\u00a0\u00bb2em\u00a0\u00bb header_font=\u00a0\u00bbFaustina||||||||\u00a0\u00bb header_text_color=\u00a0\u00bb#0e7162&Prime; header_font_size=\u00a0\u00bb60px\u00a0\u00bb header_line_height=\u00a0\u00bb1.3em\u00a0\u00bb text_orientation=\u00a0\u00bbjustified\u00a0\u00bb min_height=\u00a0\u00bb224px\u00a0\u00bb custom_margin=\u00a0\u00bb0px|5px|0px|5px|false|true\u00a0\u00bb custom_padding=\u00a0\u00bb|10px||10px|false|false\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb]<\/p>\n<ul>\n<li>Le <strong>potentiel des th\u00e9rapies g\u00e9n\u00e9tiques<\/strong>, c&rsquo;est-\u00e0-dire des traitements con\u00e7us pour cibler des erreurs sp\u00e9cifiques dans les g\u00e8nes d&rsquo;une personne, a constitu\u00e9 l&rsquo;un des principaux th\u00e8mes de la conf\u00e9rence.<\/li>\n<li>De nouveaux outils permettent d\u00e9sormais d&rsquo;analyser les changements g\u00e9n\u00e9tiques individuels et d&rsquo;identifier ceux qui pourraient r\u00e9pondre \u00e0 une th\u00e9rapie, comme les oligonucl\u00e9otides antisens (ASO), qui aident d\u00e9j\u00e0 les personnes atteintes d&rsquo;autres maladies rares.<\/li>\n<li>Des travaux sont \u00e9galement men\u00e9s sur les <strong>cellules souches d\u00e9riv\u00e9es de patients (iPSC)<\/strong> afin de cr\u00e9er des cellules nerveuses en laboratoire et de tester les traitements directement sur elles.<\/li>\n<li>Ces th\u00e9rapies n&rsquo;en sont encore qu&rsquo;\u00e0 leurs d\u00e9buts pour les troubles <em>li\u00e9s \u00e0<\/em> <em>la CLCN4<\/em>, mais la technologie \u00e9volue rapidement et plusieurs \u00e9quipes travaillent actuellement \u00e0 comprendre si et comment ces th\u00e9rapies pourraient \u00eatre appliqu\u00e9es aux troubles <em>li\u00e9s \u00e0 la CLCN4<\/em>.<\/li>\n<\/ul>\n<p>[\/et_pb_text][\/et_pb_column][et_pb_column type=\u00a0\u00bb1_2&Prime; _builder_version=\u00a0\u00bb4.27.4&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb custom_padding=\u00a0\u00bb0px||0px||false|false\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_image src=\u00a0\u00bbhttps:\/\/cureclcn4.org\/wp-content\/uploads\/2025\/06\/5.png\u00a0\u00bb title_text=\u00a0\u00bbTh\u00e9rapie g\u00e9nique\u00a0\u00bb align=\u00a0\u00bbcenter\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.4&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb max_width=\u00a0\u00bb75%\u00a0\u00bb custom_margin=\u00a0\u00bb10px||||false|false\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][\/et_pb_image][\/et_pb_column][\/et_pb_row][et_pb_row _builder_version=\u00a0\u00bb4.27.4&Prime; background_color=\u00a0\u00bb#ffffff\u00a0\u00bb width=\u00a0\u00bb100%\u00a0\u00bb max_width=\u00a0\u00bb1100px\u00a0\u00bb min_height=\u00a0\u00bb42px\u00a0\u00bb custom_margin=\u00a0\u00bb10px||10px||false|false\u00a0\u00bb custom_padding=\u00a0\u00bb0px||0px||false|false\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_column type=\u00a0\u00bb4_4&Prime; _builder_version=\u00a0\u00bb4.27.4&Prime; custom_padding=\u00a0\u00bb0px||0px||false|false\u00a0\u00bb custom_padding_tablet=\u00a0\u00bb0px||\u00a0\u00bb custom_padding_phone=\u00a0\u00bb\u00a0\u00bb custom_padding_last_edited=\u00a0\u00bbon|desktop\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb padding_tablet=\u00a0\u00bb0px||\u00a0\u00bb padding_last_edited=\u00a0\u00bbon|tablet\u00a0\u00bb custom_padding__hover=\u00a0\u00bb|||\u00a0\u00bb padding_phone=\u00a0\u00bb0px||\u00a0\u00bb][et_pb_text _builder_version=\u00a0\u00bb4.27.4&Prime; text_font=\u00a0\u00bb||||||||\u00a0\u00bb text_font_size=\u00a0\u00bb20px\u00a0\u00bb text_line_height=\u00a0\u00bb2em\u00a0\u00bb header_font=\u00a0\u00bbFaustina|600|||||||\u00a0\u00bb header_text_color=\u00a0\u00bb#0e7162&Prime; header_font_size=\u00a0\u00bb60px\u00a0\u00bb header_line_height=\u00a0\u00bb1.3em\u00a0\u00bb header_2_font=\u00a0\u00bb|700|||||||\u00a0\u00bb header_2_text_color=\u00a0\u00bb#0e7162&Prime; header_2_font_size=\u00a0\u00bb30px\u00a0\u00bb text_orientation=\u00a0\u00bbcenter\u00a0\u00bb width=\u00a0\u00bb92.2%\u00a0\u00bb min_height=\u00a0\u00bb26px\u00a0\u00bb custom_margin=\u00a0\u00bb0px|19px|0px|19px|false|false\u00a0\u00bb custom_padding=\u00a0\u00bb0px||||false|false\u00a0\u00bb header_font_size_tablet=\u00a0\u00bb50px\u00a0\u00bb header_font_size_phone=\u00a0\u00bb40px\u00a0\u00bb header_font_size_last_edited=\u00a0\u00bbon|phone\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb]<\/p>\n<h2 style=\"text-align: left;\">Am\u00e9lioration des soins et de l&rsquo;assistance cliniques<\/h2>\n<p>[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=\u00a0\u00bb1_2,1_2&Prime; _builder_version=\u00a0\u00bb4.27.4&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb background_color=\u00a0\u00bb#FFFFFF\u00a0\u00bb width=\u00a0\u00bb100%\u00a0\u00bb min_height=\u00a0\u00bb240px\u00a0\u00bb custom_margin=\u00a0\u00bb0px|auto|0px|auto|false|false\u00a0\u00bb custom_padding=\u00a0\u00bb|0px|5px||false|false\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_column type=\u00a0\u00bb1_2&Prime; _builder_version=\u00a0\u00bb4.24.2&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_text _builder_version=\u00a0\u00bb4.27.4&Prime; text_font=\u00a0\u00bb||||||||\u00a0\u00bb text_font_size=\u00a0\u00bb16px\u00a0\u00bb text_line_height=\u00a0\u00bb2em\u00a0\u00bb header_font=\u00a0\u00bbFaustina||||||||\u00a0\u00bb header_text_color=\u00a0\u00bb#0e7162&Prime; header_font_size=\u00a0\u00bb60px\u00a0\u00bb header_line_height=\u00a0\u00bb1.3em\u00a0\u00bb text_orientation=\u00a0\u00bbjustified\u00a0\u00bb min_height=\u00a0\u00bb214px\u00a0\u00bb custom_margin=\u00a0\u00bb|5px|17px|5px|false|true\u00a0\u00bb custom_padding=\u00a0\u00bb|10px||10px|false|false\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb]<\/p>\n<ul>\n<li>Des expos\u00e9s cliniques ont montr\u00e9 comment d&rsquo;autres maladies rares ont b\u00e9n\u00e9fici\u00e9 de <strong>cliniques sp\u00e9cialis\u00e9es<\/strong>, de soins coordonn\u00e9s et de r\u00e9seaux internationaux de soins de sant\u00e9.<\/li>\n<li>Cure CLCN4 \u00e9tudie actuellement ce qu&rsquo;il faudrait faire pour cr\u00e9er une <strong>clinique ou un parcours de soins<em>sp\u00e9cifique \u00e0 la CLCN4<\/em> <\/strong>.  <\/li>\n<li>Pour ce faire, il est essentiel d&rsquo;<strong>\u00e9tablir des collaborations<\/strong> entre les m\u00e9decins, les chercheurs et les familles.<\/li>\n<li>Notre objectif est de veiller \u00e0 ce que les familles aient acc\u00e8s \u00e0 des <strong>soins sp\u00e9cialis\u00e9s<\/strong>, \u00e0 des informations et \u00e0 des <strong>conseils<\/strong>, ainsi qu&rsquo;\u00e0 un <strong>soutien coordonn\u00e9<\/strong>, et pas seulement \u00e0 des r\u00e9sultats g\u00e9n\u00e9tiques.<\/li>\n<\/ul>\n<p>[\/et_pb_text][\/et_pb_column][et_pb_column type=\u00a0\u00bb1_2&Prime; _builder_version=\u00a0\u00bb4.24.2&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_image src=\u00a0\u00bbhttps:\/\/cureclcn4.org\/wp-content\/uploads\/2025\/06\/6.png\u00a0\u00bb title_text=\u00a0\u00bbClinicien\u00a0\u00bb align=\u00a0\u00bbcenter\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.4&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb max_width=\u00a0\u00bb75%\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][\/et_pb_image][\/et_pb_column][\/et_pb_row][et_pb_row _builder_version=\u00a0\u00bb4.27.4&Prime; background_color=\u00a0\u00bb#ffffff\u00a0\u00bb width=\u00a0\u00bb100%\u00a0\u00bb max_width=\u00a0\u00bb1100px\u00a0\u00bb min_height=\u00a0\u00bb40px\u00a0\u00bb custom_margin=\u00a0\u00bb10px||10px||false|false\u00a0\u00bb custom_padding=\u00a0\u00bb0px||0px||false|false\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_column type=\u00a0\u00bb4_4&Prime; _builder_version=\u00a0\u00bb4.27.4&Prime; custom_padding=\u00a0\u00bb0px||0px||false|false\u00a0\u00bb custom_padding_tablet=\u00a0\u00bb0px||\u00a0\u00bb custom_padding_phone=\u00a0\u00bb\u00a0\u00bb custom_padding_last_edited=\u00a0\u00bbon|desktop\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb padding_tablet=\u00a0\u00bb0px||\u00a0\u00bb padding_last_edited=\u00a0\u00bbon|tablet\u00a0\u00bb custom_padding__hover=\u00a0\u00bb|||\u00a0\u00bb padding_phone=\u00a0\u00bb0px||\u00a0\u00bb][et_pb_text _builder_version=\u00a0\u00bb4.27.4&Prime; text_font=\u00a0\u00bb||||||||\u00a0\u00bb text_font_size=\u00a0\u00bb20px\u00a0\u00bb text_line_height=\u00a0\u00bb2em\u00a0\u00bb header_font=\u00a0\u00bbFaustina|600|||||||\u00a0\u00bb header_text_color=\u00a0\u00bb#0e7162&Prime; header_font_size=\u00a0\u00bb60px\u00a0\u00bb header_line_height=\u00a0\u00bb1.3em\u00a0\u00bb header_2_font=\u00a0\u00bb|700|||||||\u00a0\u00bb header_2_text_color=\u00a0\u00bb#0e7162&Prime; header_2_font_size=\u00a0\u00bb30px\u00a0\u00bb text_orientation=\u00a0\u00bbcenter\u00a0\u00bb width=\u00a0\u00bb92.2%\u00a0\u00bb min_height=\u00a0\u00bb26px\u00a0\u00bb custom_margin=\u00a0\u00bb0px|19px|0px|19px|false|false\u00a0\u00bb custom_padding=\u00a0\u00bb0px||||false|false\u00a0\u00bb header_font_size_tablet=\u00a0\u00bb50px\u00a0\u00bb header_font_size_phone=\u00a0\u00bb40px\u00a0\u00bb header_font_size_last_edited=\u00a0\u00bbon|phone\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb]<\/p>\n<h2 style=\"text-align: left;\">Prochaines \u00e9tapes<\/h2>\n<p>[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=\u00a0\u00bb1_2,1_2&Prime; _builder_version=\u00a0\u00bb4.27.4&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb background_color=\u00a0\u00bb#FFFFFF\u00a0\u00bb width=\u00a0\u00bb100%\u00a0\u00bb min_height=\u00a0\u00bb291px\u00a0\u00bb custom_margin=\u00a0\u00bb0px|auto|25px|auto|false|false\u00a0\u00bb custom_padding=\u00a0\u00bb0px|0px|0px||false|false\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_column type=\u00a0\u00bb1_2&Prime; _builder_version=\u00a0\u00bb4.24.2&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_text _builder_version=\u00a0\u00bb4.27.4&Prime; text_font=\u00a0\u00bb||||||||\u00a0\u00bb text_font_size=\u00a0\u00bb16px\u00a0\u00bb text_line_height=\u00a0\u00bb2em\u00a0\u00bb header_font=\u00a0\u00bbFaustina||||||||\u00a0\u00bb header_text_color=\u00a0\u00bb#0e7162&Prime; header_font_size=\u00a0\u00bb60px\u00a0\u00bb header_line_height=\u00a0\u00bb1.3em\u00a0\u00bb text_orientation=\u00a0\u00bbjustified\u00a0\u00bb min_height=\u00a0\u00bb239px\u00a0\u00bb custom_margin=\u00a0\u00bb0px|5px|0px|5px|false|true\u00a0\u00bb custom_padding=\u00a0\u00bb|10px||10px|false|false\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb]<\/p>\n<ul>\n<li>Les chercheurs pr\u00e9voient d&rsquo;effectuer d&rsquo;autres tests sur les mod\u00e8les de rat <em>Clcn4<\/em>, de cr\u00e9er d&rsquo;autres mod\u00e8les d&rsquo;affections <em>li\u00e9es au CLCN4<\/em>, y compris des mod\u00e8les animaux et cellulaires, et d&rsquo;explorer des th\u00e9rapies bas\u00e9es sur les g\u00e8nes.<\/li>\n<li>Le CLCN4 s&rsquo;efforce d&rsquo;\u00e9tablir des liens avec les r\u00e9seaux europ\u00e9ens et britanniques afin d&rsquo;am\u00e9liorer les soins et les services.<\/li>\n<li>Nous continuerons \u00e0 promouvoir l&rsquo;acc\u00e8s aux outils de recherche, \u00e0 soutenir la collaboration entre les scientifiques, les m\u00e9decins et les familles, et \u00e0 d\u00e9velopper le <a href=\"https:\/\/cureclcn4.org\/fr\/registre-des-patients\/\">registre des patients<\/a> h\u00e9berg\u00e9 par Simons Searchlight, qui joue un r\u00f4le essentiel dans l&rsquo;avancement de la recherche.<\/li>\n<\/ul>\n<p>[\/et_pb_text][\/et_pb_column][et_pb_column type=\u00a0\u00bb1_2&Prime; _builder_version=\u00a0\u00bb4.24.2&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_image src=\u00a0\u00bbhttps:\/\/cureclcn4.org\/wp-content\/uploads\/2025\/06\/7.png\u00a0\u00bb title_text=\u00a0\u00bbL&apos;avenir\u00a0\u00bb align=\u00a0\u00bbcenter\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.4&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb max_width=\u00a0\u00bb75%\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; admin_label=\u00a0\u00bbSponsors\u00a0\u00bb _builder_version=\u00a0\u00bb4.16&Prime; background_color=\u00a0\u00bbrgba(14,113,98,0.9)\u00a0\u00bb use_background_color_gradient=\u00a0\u00bbon\u00a0\u00bb background_color_gradient_stops=\u00a0\u00bbrgba(14,113,98,0.9) 0%|#0e7162 100%\u00a0\u00bb background_color_gradient_overlays_image=\u00a0\u00bbon\u00a0\u00bb background_color_gradient_start=\u00a0\u00bbrgba(14,113,98,0.9)\u00a0\u00bb background_color_gradient_end=\u00a0\u00bb#0e7162&Prime; 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Parmi les sujets abord\u00e9s, citons les nouvelles connaissances sur la biologie de l&rsquo;affection li\u00e9e au CLCN4, les avanc\u00e9es sur les mod\u00e8les animaux du CLCN4, le potentiel des th\u00e9rapies g\u00e9n\u00e9tiques et les \u00e9tapes vers l&rsquo;am\u00e9lioration des soins cliniques. Lisez le r\u00e9sum\u00e9 complet en langage clair pour les familles ici.  <\/p>\n","protected":false},"author":2,"featured_media":6686,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_et_pb_use_builder":"on","_et_pb_old_content":"","_et_gb_content_width":"","footnotes":""},"categories":[51],"tags":[],"class_list":["post-6786","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-evenements"],"_links":{"self":[{"href":"https:\/\/cureclcn4.org\/fr\/wp-json\/wp\/v2\/posts\/6786","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/cureclcn4.org\/fr\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/cureclcn4.org\/fr\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/cureclcn4.org\/fr\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/cureclcn4.org\/fr\/wp-json\/wp\/v2\/comments?post=6786"}],"version-history":[{"count":2,"href":"https:\/\/cureclcn4.org\/fr\/wp-json\/wp\/v2\/posts\/6786\/revisions"}],"predecessor-version":[{"id":6788,"href":"https:\/\/cureclcn4.org\/fr\/wp-json\/wp\/v2\/posts\/6786\/revisions\/6788"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/cureclcn4.org\/fr\/wp-json\/wp\/v2\/media\/6686"}],"wp:attachment":[{"href":"https:\/\/cureclcn4.org\/fr\/wp-json\/wp\/v2\/media?parent=6786"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/cureclcn4.org\/fr\/wp-json\/wp\/v2\/categories?post=6786"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/cureclcn4.org\/fr\/wp-json\/wp\/v2\/tags?post=6786"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}