{"id":3336,"date":"2023-01-09T15:39:13","date_gmt":"2023-01-09T15:39:13","guid":{"rendered":"https:\/\/cureclcn4.org\/accueil\/"},"modified":"2026-02-09T12:25:45","modified_gmt":"2026-02-09T12:25:45","slug":"accueil","status":"publish","type":"page","link":"https:\/\/cureclcn4.org\/fr\/","title":{"rendered":"Accueil"},"content":{"rendered":"<p>[et_pb_section fb_built=\u00a0\u00bb1&Prime; admin_label=\u00a0\u00bbHeader\u00a0\u00bb _builder_version=\u00a0\u00bb4.16&Prime; background_color=\u00a0\u00bb#f7f9f9&Prime; parallax=\u00a0\u00bbon\u00a0\u00bb min_height=\u00a0\u00bb587.4px\u00a0\u00bb custom_padding=\u00a0\u00bb||29px|||\u00a0\u00bb collapsed=\u00a0\u00bboff\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_row column_structure=\u00a0\u00bb1_2,1_2&Prime; _builder_version=\u00a0\u00bb4.27.4&Prime; min_height=\u00a0\u00bb202.2px\u00a0\u00bb custom_margin=\u00a0\u00bb0px|auto|0px|auto|false|false\u00a0\u00bb custom_padding=\u00a0\u00bb0px||0px||false|false\u00a0\u00bb 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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>Gu\u00e9rissons le CLCN4<\/h1>\n<p>[\/et_pb_text][et_pb_text _builder_version=\u00a0\u00bb4.27.4&Prime; text_font=\u00a0\u00bb||||||||\u00a0\u00bb text_font_size=\u00a0\u00bb18px\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 custom_margin=\u00a0\u00bb||17px|||\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb]<\/p>\n<p style=\"text-align: justify;\">Nous sommes un organisme caritatif enregistr\u00e9 qui a pour objectif d&rsquo;apporter un soutien, de sensibiliser le public et de financer la recherche m\u00e9dicale afin de trouver des traitements efficaces pour les maladies li\u00e9es au g\u00e8ne CLCN4.<\/p>\n<p>[\/et_pb_text][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 custom_margin=\u00a0\u00bb||0px||false|false\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb]<\/p>\n<p style=\"text-align: justify;\">Le <em>CLCN4<\/em> est une maladie g\u00e9n\u00e9tique rare qui provoque une d\u00e9ficience intellectuelle et d&rsquo;autres probl\u00e8mes tels que l&rsquo;\u00e9pilepsie, des troubles du comportement, des troubles moteurs et une microc\u00e9phalie.<\/p>\n<p>[\/et_pb_text][et_pb_code _builder_version=\u00a0\u00bb4.27.4&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb 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text_orientation=\u00a0\u00bbcenter\u00a0\u00bb max_width=\u00a0\u00bb800px\u00a0\u00bb module_alignment=\u00a0\u00bbcenter\u00a0\u00bb text_font_size_tablet=\u00a0\u00bb\u00a0\u00bb text_font_size_phone=\u00a0\u00bb17px\u00a0\u00bb text_font_size_last_edited=\u00a0\u00bbon|phone\u00a0\u00bb header_2_font_size_tablet=\u00a0\u00bb32px\u00a0\u00bb header_2_font_size_phone=\u00a0\u00bb22px\u00a0\u00bb header_2_font_size_last_edited=\u00a0\u00bbon|desktop\u00a0\u00bb locked=\u00a0\u00bboff\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb]<\/p>\n<h2>Transformer la recherche en espoir<\/h2>\n<p>[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=\u00a0\u00bb1_4,1_4,1_4,1_4&Prime; custom_padding_last_edited=\u00a0\u00bbon|phone\u00a0\u00bb _builder_version=\u00a0\u00bb4.16&Prime; background_color=\u00a0\u00bb#ffffff\u00a0\u00bb max_width=\u00a0\u00bb1200px\u00a0\u00bb custom_padding=\u00a0\u00bb70px|80px|28px|80px|false|false\u00a0\u00bb 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body_line_height=\u00a0\u00bb2em\u00a0\u00bb text_orientation=\u00a0\u00bbjustified\u00a0\u00bb locked=\u00a0\u00bboff\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb]<\/p>\n<p>Nous finan\u00e7ons et collaborons \u00e0 des recherches sur le g\u00e8ne CLCN4 dans le monde entier, dans le but de d\u00e9couvrir comment ce g\u00e8ne fonctionne et comment son dysfonctionnement provoque des sympt\u00f4mes neurologiques. En mettant en relation les chercheurs et les familles, nous ouvrons la voie \u00e0 des traitements efficaces. <\/p>\n<p>[\/et_pb_blurb][\/et_pb_column][et_pb_column type=\u00a0\u00bb1_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_blurb title=\u00a0\u00bbSoutien aux familles\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.4&Prime; header_font=\u00a0\u00bb|700|||||||\u00a0\u00bb header_font_size=\u00a0\u00bb16px\u00a0\u00bb header_line_height=\u00a0\u00bb2em\u00a0\u00bb body_line_height=\u00a0\u00bb2em\u00a0\u00bb text_orientation=\u00a0\u00bbjustified\u00a0\u00bb locked=\u00a0\u00bboff\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb]<\/p>\n<p>Les familles touch\u00e9es par des variants du g\u00e8ne CLCN4 sont souvent confront\u00e9es \u00e0 des difficult\u00e9s telles que des retards de d\u00e9veloppement, des convulsions et des diff\u00e9rences d&rsquo;apprentissage ou de comportement. Nous sommes l\u00e0 pour offrir des conseils, une communaut\u00e9 et un soutien, afin d&rsquo;aider les familles \u00e0 faire face au diagnostic. <\/p>\n<p>[\/et_pb_blurb][\/et_pb_column][et_pb_column type=\u00a0\u00bb1_4&Prime; _builder_version=\u00a0\u00bb4.16&Prime; _module_preset=\u00a0\u00bbdefault\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_blurb title=\u00a0\u00bbSensibilisation\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.4&Prime; header_font=\u00a0\u00bb|700|||||||\u00a0\u00bb header_font_size=\u00a0\u00bb16px\u00a0\u00bb header_line_height=\u00a0\u00bb2em\u00a0\u00bb body_line_height=\u00a0\u00bb2em\u00a0\u00bb text_orientation=\u00a0\u00bbjustified\u00a0\u00bb width=\u00a0\u00bb100%\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb]<\/p>\n<p>Nous sensibilisons les m\u00e9decins, les scientifiques et le grand public aux troubles neurod\u00e9veloppementaux li\u00e9s au g\u00e8ne CLCN4, afin d&rsquo;am\u00e9liorer le diagnostic, de mettre en relation les familles et d&rsquo;acc\u00e9l\u00e9rer la recherche vers des traitements.<\/p>\n<p>[\/et_pb_blurb][\/et_pb_column][et_pb_column type=\u00a0\u00bb1_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_blurb title=\u00a0\u00bbAidez-nous\u00a0\u00bb _builder_version=\u00a0\u00bb4.16&Prime; header_font=\u00a0\u00bb|700|||||||\u00a0\u00bb header_font_size=\u00a0\u00bb16px\u00a0\u00bb header_line_height=\u00a0\u00bb2em\u00a0\u00bb body_line_height=\u00a0\u00bb2em\u00a0\u00bb text_orientation=\u00a0\u00bbjustified\u00a0\u00bb custom_margin=\u00a0\u00bb-50px|-100px|0px|\u00a0\u00bb custom_margin_tablet=\u00a0\u00bb0px|-50px|0px|-50px|true|true\u00a0\u00bb custom_margin_phone=\u00a0\u00bb\u00a0\u00bb custom_margin_last_edited=\u00a0\u00bbon|tablet\u00a0\u00bb custom_padding=\u00a0\u00bb30px|30px|30px|30px|true|true\u00a0\u00bb animation_style=\u00a0\u00bbslide\u00a0\u00bb animation_direction=\u00a0\u00bbleft\u00a0\u00bb animation_intensity_slide=\u00a0\u00bb2%\u00a0\u00bb border_radii=\u00a0\u00bbon|3px|3px|3px|3px\u00a0\u00bb border_width_all=\u00a0\u00bb20px\u00a0\u00bb border_color_all=\u00a0\u00bb#26c699&Prime; box_shadow_style=\u00a0\u00bbpreset3&Prime; box_shadow_vertical=\u00a0\u00bb40px\u00a0\u00bb box_shadow_blur=\u00a0\u00bb100px\u00a0\u00bb box_shadow_spread=\u00a0\u00bb-30px\u00a0\u00bb box_shadow_color=\u00a0\u00bbrgba(0,0,0,0.22)\u00a0\u00bb locked=\u00a0\u00bboff\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb]<\/p>\n<p>Rejoignez-nous o\u00f9 que vous soyez dans le monde pour aider les personnes et les familles touch\u00e9es par le CLCN4. 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En recueillant des informations sur les personnes atteintes d&rsquo;une maladie li\u00e9e au g\u00e8ne CLCN4, nous pouvons mieux comprendre comment cette maladie affecte diff\u00e9rents individus et soutenir les recherches futures et les essais cliniques. <\/p>\n<p>[\/et_pb_text][et_pb_button button_url=\u00a0\u00bbhttps:\/\/cureclcn4.org\/fr\/registre-des-patients\/\u00a0\u00bb button_text=\u00a0\u00bbRejoignez le registre des patients\u00a0\u00bb button_alignment=\u00a0\u00bbleft\u00a0\u00bb _builder_version=\u00a0\u00bb4.16&Prime; _module_preset=\u00a0\u00bb88084d0d-b45c-415e-b197-2d1c061bed62&Prime; button_text_size=\u00a0\u00bb18px\u00a0\u00bb button_border_color=\u00a0\u00bb#26c699&Prime; button_use_icon=\u00a0\u00bboff\u00a0\u00bb locked=\u00a0\u00bboff\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 Us\u00a0\u00bb 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s&rsquo;engage \u00e0 trouver des options de traitement viables pour les familles touch\u00e9es par les variantes du CLCN4. Parmi les choses que nous soutenons, citons<\/p>\n<p>&#8211; L&rsquo;identification de projets de recherche appropri\u00e9s<\/p>\n<p>&#8211; Mise en place et maintenance d&rsquo;un registre des patients<\/p>\n<p>&#8211; Animation d&rsquo;une communaut\u00e9 de familles touch\u00e9es<\/p>\n<p>&nbsp;<\/p>\n<p>[\/et_pb_text][\/et_pb_column][et_pb_column type=\u00a0\u00bb1_2&Prime; _builder_version=\u00a0\u00bb4.16&Prime; custom_padding=\u00a0\u00bb|||\u00a0\u00bb custom_padding_tablet=\u00a0\u00bb|||||true\u00a0\u00bb custom_padding_last_edited=\u00a0\u00bboff|desktop\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb padding_tablet=\u00a0\u00bb|||||true\u00a0\u00bb padding_last_edited=\u00a0\u00bboff|desktop\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_line_height=\u00a0\u00bb2em\u00a0\u00bb header_font=\u00a0\u00bb||||||||\u00a0\u00bb header_3_font=\u00a0\u00bbFaustina|600|||||||\u00a0\u00bb header_3_text_color=\u00a0\u00bb#0e7162&Prime; header_3_font_size=\u00a0\u00bb26px\u00a0\u00bb header_3_line_height=\u00a0\u00bb1.2em\u00a0\u00bb max_width=\u00a0\u00bb600px\u00a0\u00bb header_3_font_size_tablet=\u00a0\u00bb22px\u00a0\u00bb header_3_font_size_phone=\u00a0\u00bb18px\u00a0\u00bb header_3_font_size_last_edited=\u00a0\u00bbon|tablet\u00a0\u00bb locked=\u00a0\u00bboff\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb header_2_font_size__hover=\u00a0\u00bb26px\u00a0\u00bb header_2_font_size__hover_enabled=\u00a0\u00bb26px\u00a0\u00bb header_2_letter_spacing__hover=\u00a0\u00bb0px\u00a0\u00bb header_2_letter_spacing__hover_enabled=\u00a0\u00bb0px\u00a0\u00bb header_2_line_height__hover=\u00a0\u00bb1em\u00a0\u00bb header_2_line_height__hover_enabled=\u00a0\u00bb1em\u00a0\u00bb header_2_text_shadow_style__hover=\u00a0\u00bbnone\u00a0\u00bb header_2_text_shadow_style__hover_enabled=\u00a0\u00bbnone\u00a0\u00bb header_2_text_shadow_color__hover=\u00a0\u00bbrgba(0,0,0,0.4)\u00a0\u00bb header_2_text_shadow_color__hover_enabled=\u00a0\u00bbrgba(0,0,0,0.4)\u00a0\u00bb]<\/p>\n<h3>Notre histoire<\/h3>\n<p>La Cure CLCN4 a \u00e9t\u00e9 cr\u00e9\u00e9e par une famille ayant un enfant atteint. Lisez notre histoire <a href=\"https:\/\/cureclcn4.org\/367-2\/\">ici<\/a>.<\/p>\n<p>Notre voyage est une exp\u00e9rience d&rsquo;apprentissage continu sur la fa\u00e7on d&rsquo;ouvrir de nouvelles voies pour des traitements qui changent la donne pour les patients, les familles et les chercheurs.<\/p>\n<p>[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=\u00a0\u00bb1&Prime; admin_label=\u00a0\u00bbFeatures\u00a0\u00bb _builder_version=\u00a0\u00bb4.16&Prime; collapsed=\u00a0\u00bboff\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_row column_structure=\u00a0\u00bb1_3,2_3&Prime; _builder_version=\u00a0\u00bb4.16&Prime; max_width=\u00a0\u00bb1280px\u00a0\u00bb use_custom_width=\u00a0\u00bbon\u00a0\u00bb custom_width_px=\u00a0\u00bb1280px\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_column type=\u00a0\u00bb1_3&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_line_height=\u00a0\u00bb2em\u00a0\u00bb header_font=\u00a0\u00bb||||||||\u00a0\u00bb header_2_font=\u00a0\u00bbFaustina|600|||||||\u00a0\u00bb header_2_text_color=\u00a0\u00bb#0e7162&Prime; header_2_font_size=\u00a0\u00bb42px\u00a0\u00bb header_2_line_height=\u00a0\u00bb1.4em\u00a0\u00bb max_width=\u00a0\u00bb600px\u00a0\u00bb module_alignment=\u00a0\u00bbcenter\u00a0\u00bb header_2_font_size_tablet=\u00a0\u00bb32px\u00a0\u00bb header_2_font_size_phone=\u00a0\u00bb22px\u00a0\u00bb header_2_font_size_last_edited=\u00a0\u00bbon|desktop\u00a0\u00bb locked=\u00a0\u00bboff\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb]<\/p>\n<h2>Nous invitons les familles du monde entier<\/h2>\n<p>If you have a family member affected by CLCN4-related condition variant, we invite you to get in touch and join our Registry.<\/p>\n<p>[\/et_pb_text][\/et_pb_column][et_pb_column type=\u00a0\u00bb2_3&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\u00bbhttps:\/\/cureclcn4.org\/wp-content\/uploads\/2020\/08\/charity-19.png\u00a0\u00bb show_bottom_space=\u00a0\u00bboff\u00a0\u00bb align_tablet=\u00a0\u00bbcenter\u00a0\u00bb align_phone=\u00a0\u00bb\u00a0\u00bb align_last_edited=\u00a0\u00bbon|desktop\u00a0\u00bb _builder_version=\u00a0\u00bb4.16&Prime; 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_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_column][\/et_pb_row][et_pb_row column_structure=\u00a0\u00bb1_3,1_3,1_3&Prime; _builder_version=\u00a0\u00bb4.18.0&Prime; global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_column type=\u00a0\u00bb1_3&Prime; _builder_version=\u00a0\u00bb4.18.0&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\u00bbhttps:\/\/cureclcn4.org\/wp-content\/uploads\/2022\/10\/Searchlight_Logo_wSIMONS_RGB.png\u00a0\u00bb alt=\u00a0\u00bbpartenaire clcn4&Prime; title_text=\u00a0\u00bbSearchlight_Logo_wSIMONS_RGB\u00a0\u00bb align_tablet=\u00a0\u00bbcenter\u00a0\u00bb align_phone=\u00a0\u00bb\u00a0\u00bb align_last_edited=\u00a0\u00bbon|desktop\u00a0\u00bb _builder_version=\u00a0\u00bb4.18.0&Prime; global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][\/et_pb_image][\/et_pb_column][et_pb_column type=\u00a0\u00bb1_3&Prime; 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Participez.<\/h2>\n<p>[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row _builder_version=\u00a0\u00bb4.16&Prime; background_color=\u00a0\u00bb#ffffff\u00a0\u00bb max_width=\u00a0\u00bb850px\u00a0\u00bb custom_padding=\u00a0\u00bb60px|60px|60px|60px|true|true\u00a0\u00bb animation_style=\u00a0\u00bbslide\u00a0\u00bb animation_direction=\u00a0\u00bbtop\u00a0\u00bb animation_intensity_slide=\u00a0\u00bb2%\u00a0\u00bb box_shadow_style=\u00a0\u00bbpreset3&Prime; box_shadow_vertical=\u00a0\u00bb40px\u00a0\u00bb box_shadow_blur=\u00a0\u00bb100px\u00a0\u00bb box_shadow_spread=\u00a0\u00bb-30px\u00a0\u00bb box_shadow_color=\u00a0\u00bbrgba(0,0,0,0.22)\u00a0\u00bb use_custom_width=\u00a0\u00bbon\u00a0\u00bb custom_width_px=\u00a0\u00bb850px\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_contact_form email=\u00a0\u00bbinfo@cureclcn4.org\u00a0\u00bb success_message=\u00a0\u00bbMerci de nous avoir contact\u00e9s. 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