{"id":7053,"date":"2025-11-11T12:33:53","date_gmt":"2025-11-11T12:33:53","guid":{"rendered":"https:\/\/cureclcn4.org\/recursos-para-familias\/"},"modified":"2025-11-11T12:35:43","modified_gmt":"2025-11-11T12:35:43","slug":"recursos-para-familias","status":"publish","type":"page","link":"https:\/\/cureclcn4.org\/pt-br\/recursos-para-familias\/","title":{"rendered":"Recursos para fam\u00edlias"},"content":{"rendered":"

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Recursos – para fam\u00edlias<\/h1>\n

[\/et_pb_text][et_pb_text _builder_version=”4.27.4″ text_font=”||||||||” text_font_size=”18px” text_line_height=”2em” header_font=”Faustina||||||||” header_text_color=”#0e7162″ header_font_size=”60px” header_line_height=”1.3em” custom_margin=”||0px||false|false” hover_enabled=”0″ global_colors_info=”{}” sticky_enabled=”0″]<\/p>\n

Al\u00e9m das informa\u00e7\u00f5es fornecidas na se\u00e7\u00e3o Fam\u00edlias<\/a> do nosso site, reunimos abaixo uma cole\u00e7\u00e3o de recursos \u00fateis \u2014 desde oportunidades para se conectar com outras fam\u00edlias diagnosticadas com condi\u00e7\u00f5es relacionadas ao CLCN4 at\u00e9 pacotes de informa\u00e7\u00f5es e fichas t\u00e9cnicas que voc\u00ea pode compartilhar com seu m\u00e9dico ou equipe de sa\u00fade.<\/p>\n

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Pacote de boas-vindas do Cure CLCN4<\/h2>\n

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Nosso novo Pacote de Boas-Vindas j\u00e1 est\u00e1 dispon\u00edvel para download! Este livreto completo est\u00e1 repleto de recursos essenciais para fam\u00edlias que lidam com a condi\u00e7\u00e3o relacionada ao CLCN4. Nele, voc\u00ea encontrar\u00e1 informa\u00e7\u00f5es atualizadas sobre a condi\u00e7\u00e3o relacionada ao CLCN4, bem como explica\u00e7\u00f5es acess\u00edveis para toda a fam\u00edlia sobre a biologia, o diagn\u00f3stico e os sintomas do CLCN4. Voc\u00ea tamb\u00e9m encontrar\u00e1 conselhos sobre cuidados, perguntas frequentes, recursos e maneiras de se envolver! <\/p>\n

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Clique nos bot\u00f5es abaixo para obter sua c\u00f3pia gratuita<\/strong>. <\/p>\n

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Ingl\u00eas<\/a> Espanhol<\/a> Italiano<\/a> Alem\u00e3o<\/a><\/div>\n

[\/et_pb_code][\/et_pb_column][et_pb_column type=”1_2″ _builder_version=”4.16″ custom_padding=”|||” global_colors_info=”{}” custom_padding__hover=”|||”][et_pb_image src=”https:\/\/cureclcn4.org\/wp-content\/uploads\/2024\/09\/Welcome-Pack-SM_HQ.png” title_text=”Pacote de boas-vindas SM_HQ” _builder_version=”4.27.4″ _module_preset=”default” max_width=”95%” module_alignment=”center” hover_enabled=”0″ global_colors_info=”{}” sticky_enabled=”0″][\/et_pb_image][\/et_pb_column][\/et_pb_row][et_pb_row custom_padding_last_edited=”on|phone” _builder_version=”4.27.4″ background_color=”#ffffff” max_width=”1200px” custom_padding=”40px|80px|40px|80px|false|true” custom_padding_tablet=”” custom_padding_phone=”|30px||30px||true” hover_enabled=”0″ box_shadow_style=”preset3″ box_shadow_vertical=”40px” box_shadow_blur=”100px” box_shadow_spread=”-30px” box_shadow_color=”rgba(0,0,0,0.22)” use_custom_width=”on” custom_width_px=”1200px” global_colors_info=”{}” sticky_enabled=”0″][et_pb_column type=”4_4″ _builder_version=”4.16″ custom_padding=”|||” hover_enabled=”0″ global_colors_info=”{}” custom_padding__hover=”|||” sticky_enabled=”0″][et_pb_text _builder_version=”4.27.4″ text_font=”Faustina||||||||” text_font_size=”24px” text_line_height=”2em” link_font=”|700|||||||” link_text_color=”#26c699″ header_font=”||||||||” header_2_font=”Faustina|600|||||||” header_2_text_color=”#0e7162″ header_2_font_size=”42px” header_2_line_height=”1.4em” text_orientation=”center” max_width=”850px” module_alignment=”center” hover_enabled=”0″ text_font_size_tablet=”” text_font_size_phone=”17px” text_font_size_last_edited=”on|phone” header_2_font_size_tablet=”32px” header_2_font_size_phone=”22px” header_2_font_size_last_edited=”on|desktop” locked=”off” global_colors_info=”{}” sticky_enabled=”0″ min_height=”65px” content__hover_enabled=”on|desktop” content__hover=”<\/p>\n

Mais informa\u00e7\u00f5es para voc\u00ea e seu m\u00e9dico<\/h2>\n

“]<\/p>\n

Mais informa\u00e7\u00f5es para voc\u00ea e seu m\u00e9dico<\/h2>\n

[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row custom_padding_last_edited=”on|phone” _builder_version=”4.16″ background_color=”#ffffff” max_width=”1200px” custom_padding=”40px|80px|27px|80px|false|true” custom_padding_tablet=”” custom_padding_phone=”|30px||30px||true” box_shadow_style=”preset3″ box_shadow_vertical=”40px” box_shadow_blur=”100px” box_shadow_spread=”-30px” box_shadow_color=”rgba(0,0,0,0.22)” use_custom_width=”on” custom_width_px=”1200px” global_colors_info=”{}” column_structure=”1_3,1_3,1_3″][et_pb_column type=”1_3″ _builder_version=”4.16″ custom_padding=”|||” hover_enabled=”0″ global_colors_info=”{}” custom_padding__hover=”|||” sticky_enabled=”0″][et_pb_heading title=”Folha de dados do CLCN4″ _builder_version=”4.27.4″ _module_preset=”default” hover_enabled=”0″ sticky_enabled=”0″ title_level=”h3″ title_text_align=”center” title_text_color=”#0e7162″ title_font=”|700|||||||” custom_margin=”||0px||false|false”][\/et_pb_heading][et_pb_blurb content_max_width=”800px” _builder_version=”4.27.4″ header_font=”|700|||||||” header_font_size=”16px” header_line_height=”2em” body_line_height=”2em” hover_enabled=”0″ global_colors_info=”{}” sticky_enabled=”0″ body_font_size=”15px”]<\/p>\n

Esta ficha informativa<\/a> sobre a condi\u00e7\u00e3o relacionada ao CLCN4<\/em>, fornecida pelo Center for Genetics Education (Austr\u00e1lia) para fam\u00edlias diagnosticadas com CLCN4<\/em>, cont\u00e9m todas as principais informa\u00e7\u00f5es sobre essa condi\u00e7\u00e3o, incluindo gen\u00e9tica, sintomas, tratamento, recursos e muito mais!<\/p>\n

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Um excelente recurso para compartilhar com seu m\u00e9dico e profissionais de sa\u00fade! Esta publica\u00e7\u00e3o da GeneReview<\/a> cont\u00e9m informa\u00e7\u00f5es atualizadas sobre o dist\u00farbio do desenvolvimento neurol\u00f3gico relacionado ao CLCN4, incluindo diagn\u00f3stico, caracter\u00edsticas cl\u00ednicas, tratamento e recursos. <\/p>\n

[\/et_pb_blurb][\/et_pb_column][et_pb_column type=”1_3″ _builder_version=”4.16″ custom_padding=”|||” hover_enabled=”0″ global_colors_info=”{}” custom_padding__hover=”|||” sticky_enabled=”0″][et_pb_heading title=”Confer\u00eancias familiares anteriores” _builder_version=”4.27.4″ _module_preset=”default” hover_enabled=”0″ sticky_enabled=”0″ title_level=”h3″ title_text_align=”center” title_text_color=”#0e7162″ title_font=”|700|||||||” custom_margin=”||0px||false|false”][\/et_pb_heading][et_pb_blurb content_max_width=”800px” _builder_version=”4.27.4″ header_font=”|700|||||||” header_text_align=”left” header_font_size=”16px” header_line_height=”2em” body_line_height=”2em” custom_margin=”0px|||0px|false|false” custom_padding=”|||0px|false|false” hover_enabled=”0″ global_colors_info=”{}” sticky_enabled=”0″ body_font_size=”15px”]<\/p>\n

Nossa primeira reuni\u00e3o familiar on-line foi realizada em agosto de 2021, reunindo fam\u00edlias e especialistas para compartilhar conhecimentos e experi\u00eancias vividas sobre as condi\u00e7\u00f5es relacionadas ao CLCN4. Desde ent\u00e3o, realizamos v\u00e1rias reuni\u00f5es familiares on-line, continuando a conectar e apoiar nossa comunidade global de CLCN4. As grava\u00e7\u00f5es das reuni\u00f5es anteriores podem ser encontradas aqui<\/a>. <\/p>\n

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Comunidade: Conectar-se com outras fam\u00edlias<\/h2>\n

[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row custom_padding_last_edited=”on|phone” _builder_version=”4.27.0″ background_color=”#ffffff” max_width=”1200px” custom_padding=”40px|80px|27px|80px|false|true” custom_padding_tablet=”” custom_padding_phone=”|30px||30px||true” box_shadow_style=”preset3″ box_shadow_vertical=”40px” box_shadow_blur=”100px” box_shadow_spread=”-30px” box_shadow_color=”rgba(0,0,0,0.22)” use_custom_width=”on” custom_width_px=”1200px” global_colors_info=”{}” column_structure=”1_2,1_2″][et_pb_column type=”1_2″ _builder_version=”4.16″ custom_padding=”|||” global_colors_info=”{}” custom_padding__hover=”|||”][et_pb_heading title=”Grupo de fam\u00edlias CLCN4 no Facebook” _builder_version=”4.27.4″ _module_preset=”default” hover_enabled=”0″ sticky_enabled=”0″ title_level=”h3″ title_text_align=”left” title_text_color=”#0e7162″ title_font=”|700|||||||” custom_margin=”||5px||false|false”][\/et_pb_heading][et_pb_blurb content_max_width=”800px” _builder_version=”4.27.4″ header_font=”|700|||||||” header_font_size=”16px” header_line_height=”2em” body_line_height=”2em” custom_margin=”|||0px|false|false” hover_enabled=”0″ global_colors_info=”{}” sticky_enabled=”0″ body_font_size=”15px”]<\/p>\n

Um grupo privado<\/a> para fam\u00edlias que vivem com doen\u00e7as relacionadas ao CLCN4<\/em>. Participe para ter a oportunidade de se conectar com o restante da comunidade CLCN4<\/em>, fazer perguntas e compartilhar experi\u00eancias. <\/p>\n

[\/et_pb_blurb][et_pb_button button_url=”https:\/\/www.facebook.com\/groups\/272975780022928″ url_new_window=”on” button_text=”Registre-se agora” button_alignment=”center” _builder_version=”4.27.4″ _module_preset=”default” custom_button=”on” button_text_size=”17px” button_text_color=”#ffffff” button_bg_color=”#12876f” button_border_width=”0px” button_border_color=”#f0b800″ button_border_radius=”40px” button_letter_spacing=”0px” button_icon_color=”#000000″ hover_enabled=”0″ global_colors_info=”{}” sticky_enabled=”0″][\/et_pb_button][et_pb_blurb title=”P\u00e1gina do CureCLCN4 no Facebook (para a comunidade em geral)” content_max_width=”800px” _builder_version=”4.17.4″ header_font=”|700|||||||” header_font_size=”16px” header_line_height=”2em” body_line_height=”2em” global_colors_info=”{}”]<\/p>\n

Esta \u00e9 a p\u00e1gina da nossa organiza\u00e7\u00e3o no Facebook<\/a>. Siga-nos para ficar por dentro das not\u00edcias sobre a institui\u00e7\u00e3o de caridade, nossos projetos de pesquisa, iniciativas de arrecada\u00e7\u00e3o de fundos e eventos. Voc\u00ea n\u00e3o est\u00e1 no Facebook? Voc\u00ea tamb\u00e9m pode nos seguir no Instagram<\/a>! <\/p>\n

[\/et_pb_blurb][\/et_pb_column][et_pb_column type=”1_2″ _builder_version=”4.16″ custom_padding=”|||” global_colors_info=”{}” custom_padding__hover=”|||”][et_pb_image src=”https:\/\/cureclcn4.org\/wp-content\/uploads\/2025\/11\/Community_2.png” _builder_version=”4.27.4″ _module_preset=”default” title_text=”Comunidade_2″ max_width=”94%” hover_enabled=”0″ sticky_enabled=”0″][\/et_pb_image][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=”1″ admin_label=”Video” _builder_version=”4.16″ background_color=”#3a897e” custom_padding=”0|1px|0|0px|false|false” collapsed=”off” global_colors_info=”{}”][et_pb_row _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”][et_pb_column type=”4_4″ _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”][et_pb_divider show_divider=”off” _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”][\/et_pb_divider][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=”1″ fullwidth=”on” _builder_version=”4.16″ background_color=”#f7f9f9″ global_colors_info=”{}” use_background_color_gradient__hover=”off” use_background_color_gradient__hover_enabled=”off” background_color_gradient_start__hover=”#2b87da” background_color_gradient_start__hover_enabled=”#2b87da” background_color_gradient_end__hover=”#29c4a9″ background_color_gradient_end__hover_enabled=”#29c4a9″ background_color_gradient_type__hover=”linear” background_color_gradient_type__hover_enabled=”linear” background_color_gradient_direction__hover=”180deg” background_color_gradient_direction__hover_enabled=”180deg” background_color_gradient_direction_radial__hover=”center” background_color_gradient_direction_radial__hover_enabled=”center” background_color_gradient_start_position__hover=”0%” background_color_gradient_start_position__hover_enabled=”0%” background_color_gradient_end_position__hover=”100%” background_color_gradient_end_position__hover_enabled=”100%” background_color_gradient_overlays_image__hover=”off” background_color_gradient_overlays_image__hover_enabled=”off” parallax__hover=”off” parallax__hover_enabled=”off” parallax_method__hover=”on” parallax_method__hover_enabled=”on” background_size__hover=”cover” background_size__hover_enabled=”cover” background_position__hover=”center” background_position__hover_enabled=”center” background_repeat__hover=”no-repeat” background_repeat__hover_enabled=”no-repeat” background_blend__hover=”normal” background_blend__hover_enabled=”normal” allow_player_pause__hover=”off” allow_player_pause__hover_enabled=”off” background_video_pause_outside_viewport__hover=”on” background_video_pause_outside_viewport__hover_enabled=”on” background_color_gradient_stops__hover=”#2b87da 0%|#29c4a9 100%”][et_pb_fullwidth_image src=”https:\/\/cureclcn4.org\/wp-content\/uploads\/2020\/08\/charity-23.png” _builder_version=”4.16″ animation_style=”slide” animation_direction=”bottom” animation_intensity_slide=”4%” global_colors_info=”{}”][\/et_pb_fullwidth_image][\/et_pb_section]<\/p>\n","protected":false},"excerpt":{"rendered":"

Al\u00e9m das informa\u00e7\u00f5es fornecidas na se\u00e7\u00e3o Fam\u00edlias do nosso site, compilamos abaixo uma lista de outros recursos \u00fateis, desde detalhes sobre oportunidades de contato com outras fam\u00edlias afetadas pela condi\u00e7\u00e3o relacionada ao CLCN4 at\u00e9 fichas informativas sobre a condi\u00e7\u00e3o relacionada ao CLCN4 que voc\u00ea pode compartilhar com seu m\u00e9dico e profissionais de sa\u00fade.<\/p>\n","protected":false},"author":2,"featured_media":7021,"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-7053","page","type-page","status-publish","has-post-thumbnail","hentry"],"_links":{"self":[{"href":"https:\/\/cureclcn4.org\/pt-br\/wp-json\/wp\/v2\/pages\/7053","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/cureclcn4.org\/pt-br\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/cureclcn4.org\/pt-br\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/cureclcn4.org\/pt-br\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/cureclcn4.org\/pt-br\/wp-json\/wp\/v2\/comments?post=7053"}],"version-history":[{"count":4,"href":"https:\/\/cureclcn4.org\/pt-br\/wp-json\/wp\/v2\/pages\/7053\/revisions"}],"predecessor-version":[{"id":7067,"href":"https:\/\/cureclcn4.org\/pt-br\/wp-json\/wp\/v2\/pages\/7053\/revisions\/7067"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/cureclcn4.org\/pt-br\/wp-json\/wp\/v2\/media\/7021"}],"wp:attachment":[{"href":"https:\/\/cureclcn4.org\/pt-br\/wp-json\/wp\/v2\/media?parent=7053"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}