{"id":3568,"date":"2023-01-11T13:31:06","date_gmt":"2023-01-11T13:31:06","guid":{"rendered":"https:\/\/cureclcn4.org\/ressources_familles\/"},"modified":"2025-11-11T12:38:19","modified_gmt":"2025-11-11T12:38:19","slug":"ressources_familles","status":"publish","type":"page","link":"https:\/\/cureclcn4.org\/fr\/ressources_familles\/","title":{"rendered":"Ressources pour les familles"},"content":{"rendered":"

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Ressources – pour les familles<\/h1>\n

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IEn plus des informations fournies dans la section Familles<\/a> de notre site Web, nous avons rassembl\u00e9 ci-dessous une s\u00e9rie de ressources utiles, allant des possibilit\u00e9s de mise en relation avec d’autres familles ayant re\u00e7u un diagnostic li\u00e9 au g\u00e8ne CLCN4 \u00e0 des dossiers d’information et des fiches techniques que vous pouvez partager avec votre m\u00e9decin ou votre \u00e9quipe soignante.<\/p>\n

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Cure CLCN4 Pack de bienvenue<\/h2>\n

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Notre tout nouveau kit de bienvenue est d\u00e9sormais disponible au t\u00e9l\u00e9chargement ! Ce livret complet regorge de ressources essentielles pour les familles confront\u00e9es \u00e0 une maladie li\u00e9e au g\u00e8ne CLCN4. Vous y trouverez des informations actualis\u00e9es sur les maladies li\u00e9es au g\u00e8ne CLCN4, ainsi que des explications adapt\u00e9es aux familles sur la biologie, le diagnostic et les sympt\u00f4mes du CLCN4. Vous y trouverez \u00e9galement des conseils sur les soins, une foire aux questions, des ressources et des moyens de vous impliquer ! <\/p>\n

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Cliquez sur les boutons ci-dessous pour obtenir votre exemplaire gratuit. <\/p>\n

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English<\/a> Spanish<\/a> Italian<\/a> German<\/a><\/div>\n

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Informations compl\u00e9mentaires pour vous et votre m\u00e9decin<\/h2>\n

\u00ab\u00a0]<\/p>\n

Informations compl\u00e9mentaires pour vous et votre m\u00e9decin<\/h2>\n

[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=\u00a0\u00bb1_3,1_3,1_3″ custom_padding_last_edited=\u00a0\u00bbon|phone\u00a0\u00bb _builder_version=\u00a0\u00bb4.16″ background_color=\u00a0\u00bb#ffffff\u00a0\u00bb max_width=\u00a0\u00bb1200px\u00a0\u00bb custom_padding=\u00a0\u00bb40px|80px|27px|80px|false|true\u00a0\u00bb custom_padding_tablet=\u00a0\u00bb\u00a0\u00bb custom_padding_phone=\u00a0\u00bb|30px||30px||true\u00a0\u00bb box_shadow_style=\u00a0\u00bbpreset3″ 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\u00bb1200px\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_column type=\u00a0\u00bb1_3″ _builder_version=\u00a0\u00bb4.16″ custom_padding=\u00a0\u00bb|||\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb custom_padding__hover=\u00a0\u00bb|||\u00a0\u00bb][et_pb_heading title=\u00a0\u00bbFiche d'information sur le CLCN4″ _builder_version=\u00a0\u00bb4.27.4″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb title_level=\u00a0\u00bbh3″ title_font=\u00a0\u00bb|700|||||||\u00a0\u00bb title_text_align=\u00a0\u00bbcenter\u00a0\u00bb title_text_color=\u00a0\u00bb#0e7162″ custom_margin=\u00a0\u00bb||0px||false|false\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][\/et_pb_heading][et_pb_blurb content_max_width=\u00a0\u00bb800px\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.4″ header_font=\u00a0\u00bb|700|||||||\u00a0\u00bb header_font_size=\u00a0\u00bb16px\u00a0\u00bb header_line_height=\u00a0\u00bb2em\u00a0\u00bb body_font_size=\u00a0\u00bb15px\u00a0\u00bb body_line_height=\u00a0\u00bb2em\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb]<\/p>\n

Cette fiche d’information<\/a> sur les maladies li\u00e9es au g\u00e8ne CLCN4, fournie par le Centre d’\u00e9ducation g\u00e9n\u00e9tique (Australie) aux familles ayant re\u00e7u un diagnostic de CLCN4, contient toutes les informations essentielles sur cette maladie, notamment sur la g\u00e9n\u00e9tique, les sympt\u00f4mes, la prise en charge, les ressources disponibles et bien plus encore !<\/p>\n

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Une excellente ressource \u00e0 partager avec votre m\u00e9decin et les professionnels de sant\u00e9 ! Cette publication GeneReview<\/a> contient des informations actualis\u00e9es sur les troubles neurod\u00e9veloppementaux li\u00e9s au g\u00e8ne CLCN4, notamment le diagnostic, les caract\u00e9ristiques cliniques, la prise en charge et les ressources disponibles. <\/p>\n

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Notre premi\u00e8re r\u00e9union familiale en ligne a eu lieu en ao\u00fbt 2021, r\u00e9unissant des familles et des experts afin de partager leurs connaissances et leurs exp\u00e9riences v\u00e9cues concernant les maladies li\u00e9es au g\u00e8ne CLCN4. Depuis lors, nous avons organis\u00e9 plusieurs r\u00e9unions familiales en ligne, continuant ainsi \u00e0 mettre en relation et \u00e0 soutenir notre communaut\u00e9 mondiale CLCN4. Les enregistrements des r\u00e9unions pr\u00e9c\u00e9dentes sont disponibles ici<\/a>. <\/p>\n

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Communaut\u00e9 : Entrez en contact avec d’autres familles<\/h2>\n

[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=\u00a0\u00bb1_2,1_2″ custom_padding_last_edited=\u00a0\u00bbon|phone\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.0″ background_color=\u00a0\u00bb#ffffff\u00a0\u00bb max_width=\u00a0\u00bb1200px\u00a0\u00bb custom_padding=\u00a0\u00bb40px|80px|27px|80px|false|true\u00a0\u00bb custom_padding_tablet=\u00a0\u00bb\u00a0\u00bb custom_padding_phone=\u00a0\u00bb|30px||30px||true\u00a0\u00bb box_shadow_style=\u00a0\u00bbpreset3″ 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\u00bb1200px\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_column type=\u00a0\u00bb1_2″ _builder_version=\u00a0\u00bb4.16″ custom_padding=\u00a0\u00bb|||\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb custom_padding__hover=\u00a0\u00bb|||\u00a0\u00bb][et_pb_heading title=\u00a0\u00bbGroupe Facebook des familles CLCN4″ _builder_version=\u00a0\u00bb4.27.4″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb title_level=\u00a0\u00bbh3″ title_font=\u00a0\u00bb|700|||||||\u00a0\u00bb title_text_align=\u00a0\u00bbleft\u00a0\u00bb title_text_color=\u00a0\u00bb#0e7162″ custom_margin=\u00a0\u00bb||5px||false|false\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][\/et_pb_heading][et_pb_blurb content_max_width=\u00a0\u00bb800px\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.4″ header_font=\u00a0\u00bb|700|||||||\u00a0\u00bb header_font_size=\u00a0\u00bb16px\u00a0\u00bb header_line_height=\u00a0\u00bb2em\u00a0\u00bb body_font_size=\u00a0\u00bb15px\u00a0\u00bb body_line_height=\u00a0\u00bb2em\u00a0\u00bb custom_margin=\u00a0\u00bb|||0px|false|false\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb]<\/p>\n

Un groupe priv\u00e9<\/a> pour les familles touch\u00e9es par une maladie li\u00e9e au g\u00e8ne CLCN4. Rejoignez-nous pour avoir l’occasion d’\u00e9changer avec le reste de la communaut\u00e9 CLCN4, poser des questions et partager vos exp\u00e9riences.<\/p>\n

[\/et_pb_blurb][et_pb_button button_url=\u00a0\u00bbhttps:\/\/www.facebook.com\/groups\/272975780022928″ url_new_window=\u00a0\u00bbon\u00a0\u00bb button_text=\u00a0\u00bbInscrive-toi maintenant\u00a0\u00bb button_alignment=\u00a0\u00bbcenter\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.4″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb custom_button=\u00a0\u00bbon\u00a0\u00bb button_text_size=\u00a0\u00bb17px\u00a0\u00bb button_text_color=\u00a0\u00bb#ffffff\u00a0\u00bb button_bg_color=\u00a0\u00bb#12876f\u00a0\u00bb button_border_width=\u00a0\u00bb0px\u00a0\u00bb button_border_color=\u00a0\u00bb#f0b800″ button_border_radius=\u00a0\u00bb40px\u00a0\u00bb button_letter_spacing=\u00a0\u00bb0px\u00a0\u00bb button_icon_color=\u00a0\u00bb#000000″ global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][\/et_pb_button][et_pb_heading title=\u00a0\u00bbCure CLCN4 Facebook page\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.4″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb title_level=\u00a0\u00bbh3″ title_font=\u00a0\u00bb|700|||||||\u00a0\u00bb title_text_align=\u00a0\u00bbleft\u00a0\u00bb title_text_color=\u00a0\u00bb#0e7162″ custom_margin=\u00a0\u00bb||5px||false|false\u00a0\u00bb hover_enabled=\u00a0\u00bb0″ global_colors_info=\u00a0\u00bb{}\u00a0\u00bb sticky_enabled=\u00a0\u00bb0″][\/et_pb_heading][et_pb_blurb content_max_width=\u00a0\u00bb800px\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.4″ 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 hover_enabled=\u00a0\u00bb0″ global_colors_info=\u00a0\u00bb{}\u00a0\u00bb sticky_enabled=\u00a0\u00bb0″]<\/p>\n

This is our organisation’s Facebook page<\/a>. Follow us to stay up to date with news about the charity, our research projects, fundraising initiatives, and events. Pas sur Facebook ? Vous pouvez \u00e9galement nous suivre sur Instagram<\/a> !<\/p>\n

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En plus des informations fournies dans la section Familles de notre site Web, nous avons compil\u00e9 ci-dessous une liste d’autres ressources utiles, allant des d\u00e9tails sur les possibilit\u00e9s d’entrer en contact avec d’autres familles touch\u00e9es par une maladie li\u00e9e au g\u00e8ne CLCN4 aux fiches d’information sur les maladies li\u00e9es au g\u00e8ne CLCN4 que vous pouvez partager avec votre m\u00e9decin et les professionnels de sant\u00e9.<\/p>\n","protected":false},"author":2,"featured_media":7018,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_et_pb_use_builder":"on","_et_pb_old_content":"","_et_gb_content_width":"","footnotes":""},"class_list":["post-3568","page","type-page","status-publish","has-post-thumbnail","hentry"],"_links":{"self":[{"href":"https:\/\/cureclcn4.org\/fr\/wp-json\/wp\/v2\/pages\/3568","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/cureclcn4.org\/fr\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/cureclcn4.org\/fr\/wp-json\/wp\/v2\/types\/page"}],"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=3568"}],"version-history":[{"count":12,"href":"https:\/\/cureclcn4.org\/fr\/wp-json\/wp\/v2\/pages\/3568\/revisions"}],"predecessor-version":[{"id":7070,"href":"https:\/\/cureclcn4.org\/fr\/wp-json\/wp\/v2\/pages\/3568\/revisions\/7070"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/cureclcn4.org\/fr\/wp-json\/wp\/v2\/media\/7018"}],"wp:attachment":[{"href":"https:\/\/cureclcn4.org\/fr\/wp-json\/wp\/v2\/media?parent=3568"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}