{"id":2968,"date":"2022-09-29T12:53:09","date_gmt":"2022-09-29T12:53:09","guid":{"rendered":"https:\/\/cureclcn4.org\/recursos_familias\/"},"modified":"2025-11-11T12:40:22","modified_gmt":"2025-11-11T12:40:22","slug":"recursos_familias","status":"publish","type":"page","link":"https:\/\/cureclcn4.org\/es\/recursos_familias\/","title":{"rendered":"Recursos para familias"},"content":{"rendered":"

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Recursos para familias<\/h1>\n

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Adem\u00e1s de la informaci\u00f3n proporcionada en la secci\u00f3n Familias<\/a> de nuestro sitio web, hemos recopilado una serie de recursos \u00fatiles a continuaci\u00f3n, desde oportunidades para conectarse con otras familias diagnosticadas con una afecci\u00f3n relacionada con el CLCN4 hasta paquetes de informaci\u00f3n y hojas informativas que puede compartir con su m\u00e9dico o equipo de atenci\u00f3n m\u00e9dica.<\/p>\n

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Pack informativo Cure CLCN4<\/h2>\n

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\u00a1Nuestro nuevo paquete de bienvenida ya est\u00e1 disponible para descargar! Este completo folleto contiene recursos esenciales para las familias que viven con una enfermedad relacionada con el gen CLCN4. En \u00e9l encontrar\u00e1 informaci\u00f3n actualizada sobre las enfermedades relacionadas con el gen CLCN4, as\u00ed como explicaciones adaptadas a las familias sobre la biolog\u00eda, el diagn\u00f3stico y los s\u00edntomas del CLCN4. Tambi\u00e9n encontrar\u00e1 consejos sobre cuidados, preguntas frecuentes, recursos y formas de participar. <\/p>\n

[\/et_pb_blurb][et_pb_blurb content_max_width=\u00bb800px\u00bb _builder_version=\u00bb4.27.4″ header_font=\u00bb|700|||||||\u00bb header_font_size=\u00bb16px\u00bb header_line_height=\u00bb2em\u00bb body_line_height=\u00bb2em\u00bb global_colors_info=\u00bb{}\u00bb]<\/p>\n

Haga clic en los botones de abajo para obtener su copia gratuita. <\/p>\n

[\/et_pb_blurb][et_pb_code _builder_version=\u00bb4.27.4″ _module_preset=\u00bbdefault\u00bb custom_css_free_form=\u00bb\/* === Language Buttons Grid === *\/||.lang-grid {|| display: grid;|| grid-template-columns: 1fr 1fr; \/* two buttons per row *\/|| gap: 20px; \/* space between buttons *\/|| justify-items: center;|| margin-top: 24px; \/* spacing below your paragraph *\/||}||||\/* === Button Styling === *\/||.lang-grid .et_pb_button {|| background: #12876f;|| color: #ffffff !important;|| border: none;|| padding: 14px 32px;|| border-radius: 10px;|| font-weight: 600;|| text-align: center;|| text-transform: none;|| transition: all 0.2s ease-in-out;||}||||\/* Hover Effect *\/||.lang-grid .et_pb_button:hover {|| filter: brightness(1.1);|| transform: translateY(-2px);||}||||\/* Mobile: stack buttons vertically *\/||@media (max-width: 767px) {|| .lang-grid {|| grid-template-columns: 1fr;|| }||}||\u00bb global_colors_info=\u00bb{}\u00bb]<\/p>\n

Ingl\u00e9s<\/a> Espa\u00f1ol<\/a> Italiano<\/a> Alem\u00e1n<\/a><\/div>\n

[\/et_pb_code][\/et_pb_column][et_pb_column type=\u00bb1_2″ _builder_version=\u00bb4.16″ custom_padding=\u00bb|||\u00bb global_colors_info=\u00bb{}\u00bb custom_padding__hover=\u00bb|||\u00bb][et_pb_image src=\u00bbhttps:\/\/cureclcn4.org\/wp-content\/uploads\/2024\/09\/Welcome-Pack-SM_HQ.png\u00bb title_text=\u00bbPaquete de bienvenida SM_HQ\u00bb _builder_version=\u00bb4.27.4″ _module_preset=\u00bbdefault\u00bb max_width=\u00bb95%\u00bb module_alignment=\u00bbcenter\u00bb global_colors_info=\u00bb{}\u00bb][\/et_pb_image][\/et_pb_column][\/et_pb_row][et_pb_row custom_padding_last_edited=\u00bbon|phone\u00bb _builder_version=\u00bb4.27.4″ background_color=\u00bb#ffffff\u00bb max_width=\u00bb1200px\u00bb custom_padding=\u00bb40px|80px|40px|80px|false|true\u00bb custom_padding_tablet=\u00bb\u00bb custom_padding_phone=\u00bb|30px||30px||true\u00bb box_shadow_style=\u00bbpreset3″ box_shadow_vertical=\u00bb40px\u00bb box_shadow_blur=\u00bb100px\u00bb box_shadow_spread=\u00bb-30px\u00bb box_shadow_color=\u00bbrgba(0,0,0,0.22)\u00bb use_custom_width=\u00bbon\u00bb custom_width_px=\u00bb1200px\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_column type=\u00bb4_4″ _builder_version=\u00bb4.16″ custom_padding=\u00bb|||\u00bb global_colors_info=\u00bb{}\u00bb custom_padding__hover=\u00bb|||\u00bb][et_pb_text _builder_version=\u00bb4.27.4″ text_font=\u00bbFaustina||||||||\u00bb text_font_size=\u00bb24px\u00bb text_line_height=\u00bb2em\u00bb link_font=\u00bb|700|||||||\u00bb link_text_color=\u00bb#26c699″ header_font=\u00bb||||||||\u00bb header_2_font=\u00bbFaustina|600|||||||\u00bb header_2_text_color=\u00bb#0e7162″ header_2_font_size=\u00bb42px\u00bb header_2_line_height=\u00bb1.4em\u00bb text_orientation=\u00bbcenter\u00bb max_width=\u00bb850px\u00bb module_alignment=\u00bbcenter\u00bb min_height=\u00bb65px\u00bb text_font_size_tablet=\u00bb\u00bb text_font_size_phone=\u00bb17px\u00bb text_font_size_last_edited=\u00bbon|phone\u00bb header_2_font_size_tablet=\u00bb32px\u00bb header_2_font_size_phone=\u00bb22px\u00bb header_2_font_size_last_edited=\u00bbon|desktop\u00bb locked=\u00bboff\u00bb global_colors_info=\u00bb{}\u00bb content__hover_enabled=\u00bbon|desktop\u00bb content__hover=\u00bb<\/p>\n

M\u00e1s informaci\u00f3n para ti y tu m\u00e9dico<\/h2>\n

\u00ab]<\/p>\n

M\u00e1s informaci\u00f3n para ti y tu m\u00e9dico<\/h2>\n

[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=\u00bb1_3,1_3,1_3″ custom_padding_last_edited=\u00bbon|phone\u00bb _builder_version=\u00bb4.16″ background_color=\u00bb#ffffff\u00bb max_width=\u00bb1200px\u00bb custom_padding=\u00bb40px|80px|27px|80px|false|true\u00bb custom_padding_tablet=\u00bb\u00bb custom_padding_phone=\u00bb|30px||30px||true\u00bb box_shadow_style=\u00bbpreset3″ box_shadow_vertical=\u00bb40px\u00bb box_shadow_blur=\u00bb100px\u00bb box_shadow_spread=\u00bb-30px\u00bb box_shadow_color=\u00bbrgba(0,0,0,0.22)\u00bb use_custom_width=\u00bbon\u00bb custom_width_px=\u00bb1200px\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_column type=\u00bb1_3″ _builder_version=\u00bb4.16″ custom_padding=\u00bb|||\u00bb global_colors_info=\u00bb{}\u00bb custom_padding__hover=\u00bb|||\u00bb][et_pb_heading title=\u00bbFicha t\u00e9cnica del CLCN4″ _builder_version=\u00bb4.27.4″ _module_preset=\u00bbdefault\u00bb title_level=\u00bbh3″ title_font=\u00bb|700|||||||\u00bb title_text_align=\u00bbcenter\u00bb title_text_color=\u00bb#0e7162″ custom_margin=\u00bb||0px||false|false\u00bb global_colors_info=\u00bb{}\u00bb][\/et_pb_heading][et_pb_blurb content_max_width=\u00bb800px\u00bb _builder_version=\u00bb4.27.4″ header_font=\u00bb|700|||||||\u00bb header_font_size=\u00bb16px\u00bb header_line_height=\u00bb2em\u00bb body_font_size=\u00bb15px\u00bb body_line_height=\u00bb2em\u00bb global_colors_info=\u00bb{}\u00bb]<\/p>\n

Esta hoja informativa<\/a> sobre la enfermedad relacionada con el gen CLCN4, proporcionada por el Centro de Educaci\u00f3n Gen\u00e9tica (Australia) para familias diagnosticadas con CLCN4, contiene toda la informaci\u00f3n clave sobre esta enfermedad, incluyendo gen\u00e9tica, s\u00edntomas, tratamiento, recursos y mucho m\u00e1s.<\/p>\n

[\/et_pb_blurb][\/et_pb_column][et_pb_column type=\u00bb1_3″ _builder_version=\u00bb4.16″ custom_padding=\u00bb|||\u00bb global_colors_info=\u00bb{}\u00bb custom_padding__hover=\u00bb|||\u00bb][et_pb_heading title=\u00bbGene Reviews\u00bb _builder_version=\u00bb4.27.4″ _module_preset=\u00bbdefault\u00bb title_level=\u00bbh3″ title_font=\u00bb|700|||||||\u00bb title_text_align=\u00bbcenter\u00bb title_text_color=\u00bb#0e7162″ custom_margin=\u00bb||0px||false|false\u00bb global_colors_info=\u00bb{}\u00bb][\/et_pb_heading][et_pb_blurb content_max_width=\u00bb800px\u00bb _builder_version=\u00bb4.27.4″ header_font=\u00bb|700|||||||\u00bb header_font_size=\u00bb16px\u00bb header_line_height=\u00bb2em\u00bb body_font_size=\u00bb15px\u00bb body_line_height=\u00bb2em\u00bb global_colors_info=\u00bb{}\u00bb]<\/p>\n

\u00a1Un recurso excelente para compartir con su m\u00e9dico y los profesionales sanitarios! Esta publicaci\u00f3n de GeneReviews<\/a> contiene informaci\u00f3n actualizada sobre el trastorno del desarrollo neurol\u00f3gico relacionado con el gen CLCN4, incluyendo el diagn\u00f3stico, las caracter\u00edsticas cl\u00ednicas, el tratamiento y los recursos disponibles. <\/p>\n

[\/et_pb_blurb][\/et_pb_column][et_pb_column type=\u00bb1_3″ _builder_version=\u00bb4.16″ custom_padding=\u00bb|||\u00bb global_colors_info=\u00bb{}\u00bb custom_padding__hover=\u00bb|||\u00bb][et_pb_heading title=\u00bbConferencias familiares anteriores\u00bb _builder_version=\u00bb4.27.4″ _module_preset=\u00bbdefault\u00bb title_level=\u00bbh3″ title_font=\u00bb|700|||||||\u00bb title_text_align=\u00bbcenter\u00bb title_text_color=\u00bb#0e7162″ custom_margin=\u00bb||0px||false|false\u00bb global_colors_info=\u00bb{}\u00bb][\/et_pb_heading][et_pb_blurb content_max_width=\u00bb800px\u00bb _builder_version=\u00bb4.27.4″ header_font=\u00bb|700|||||||\u00bb header_text_align=\u00bbleft\u00bb header_font_size=\u00bb16px\u00bb header_line_height=\u00bb2em\u00bb body_font_size=\u00bb15px\u00bb body_line_height=\u00bb2em\u00bb custom_margin=\u00bb0px|||0px|false|false\u00bb custom_padding=\u00bb|||0px|false|false\u00bb global_colors_info=\u00bb{}\u00bb]<\/p>\n

Nuestra primera reuni\u00f3n familiar en l\u00ednea tuvo lugar en agosto de 2021 y reuni\u00f3 a familias y expertos para compartir conocimientos y experiencias vividas relacionadas con las afecciones asociadas al CLCN4. Desde entonces, hemos celebrado varias reuniones familiares en l\u00ednea, con las que seguimos conectando y apoyando a nuestra comunidad global CLCN4. Las grabaciones de las reuniones anteriores se pueden encontrar aqu\u00ed<\/a>. <\/p>\n

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Comunidad: Con\u00e9ctate con otras familias<\/h2>\n

[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=\u00bb1_2,1_2″ custom_padding_last_edited=\u00bbon|phone\u00bb _builder_version=\u00bb4.27.0″ background_color=\u00bb#ffffff\u00bb max_width=\u00bb1200px\u00bb custom_padding=\u00bb40px|80px|27px|80px|false|true\u00bb custom_padding_tablet=\u00bb\u00bb custom_padding_phone=\u00bb|30px||30px||true\u00bb box_shadow_style=\u00bbpreset3″ box_shadow_vertical=\u00bb40px\u00bb box_shadow_blur=\u00bb100px\u00bb box_shadow_spread=\u00bb-30px\u00bb box_shadow_color=\u00bbrgba(0,0,0,0.22)\u00bb use_custom_width=\u00bbon\u00bb custom_width_px=\u00bb1200px\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_column type=\u00bb1_2″ _builder_version=\u00bb4.16″ custom_padding=\u00bb|||\u00bb global_colors_info=\u00bb{}\u00bb custom_padding__hover=\u00bb|||\u00bb][et_pb_heading title=\u00bbGrupo de Facebook de familias con CLCN4″ _builder_version=\u00bb4.27.4″ _module_preset=\u00bbdefault\u00bb title_level=\u00bbh3″ title_font=\u00bb|700|||||||\u00bb title_text_align=\u00bbleft\u00bb title_text_color=\u00bb#0e7162″ custom_margin=\u00bb||5px||false|false\u00bb global_colors_info=\u00bb{}\u00bb][\/et_pb_heading][et_pb_blurb content_max_width=\u00bb800px\u00bb _builder_version=\u00bb4.27.4″ header_font=\u00bb|700|||||||\u00bb header_font_size=\u00bb16px\u00bb header_line_height=\u00bb2em\u00bb body_font_size=\u00bb15px\u00bb body_line_height=\u00bb2em\u00bb custom_margin=\u00bb|||0px|false|false\u00bb global_colors_info=\u00bb{}\u00bb]<\/p>\n

Un grupo privado<\/a> para familias que viven con una enfermedad relacionada con el gen CLCN4. \u00danete para tener la oportunidad de conectarte con el resto de la comunidad CLCN4, hacer preguntas y compartir experiencias.<\/p>\n

[\/et_pb_blurb][et_pb_button button_url=\u00bbhttps:\/\/www.facebook.com\/groups\/272975780022928″ url_new_window=\u00bbon\u00bb button_text=\u00bb\u00danete ahora\u00bb button_alignment=\u00bbcenter\u00bb _builder_version=\u00bb4.27.4″ _module_preset=\u00bbdefault\u00bb custom_button=\u00bbon\u00bb button_text_size=\u00bb17px\u00bb button_text_color=\u00bb#ffffff\u00bb button_bg_color=\u00bb#12876f\u00bb button_border_width=\u00bb0px\u00bb button_border_color=\u00bb#f0b800″ button_border_radius=\u00bb40px\u00bb button_letter_spacing=\u00bb0px\u00bb button_icon_color=\u00bb#000000″ global_colors_info=\u00bb{}\u00bb][\/et_pb_button][et_pb_heading title=\u00bbP\u00e1gina de Facebook de Cure CLCN4″ _builder_version=\u00bb4.27.4″ _module_preset=\u00bbdefault\u00bb title_level=\u00bbh3″ title_font=\u00bb|700|||||||\u00bb title_text_align=\u00bbleft\u00bb title_text_color=\u00bb#0e7162″ custom_margin=\u00bb||5px||false|false\u00bb hover_enabled=\u00bb0″ global_colors_info=\u00bb{}\u00bb sticky_enabled=\u00bb0″][\/et_pb_heading][et_pb_blurb content_max_width=\u00bb800px\u00bb _builder_version=\u00bb4.27.4″ header_font=\u00bb|700|||||||\u00bb header_font_size=\u00bb16px\u00bb header_line_height=\u00bb2em\u00bb body_line_height=\u00bb2em\u00bb hover_enabled=\u00bb0″ global_colors_info=\u00bb{}\u00bb sticky_enabled=\u00bb0″]<\/p>\n

Esta es la p\u00e1gina de Facebook<\/a> de nuestra organizaci\u00f3n. S\u00edganos para mantenerse al d\u00eda con las noticias sobre la organizaci\u00f3n ben\u00e9fica, nuestros proyectos de investigaci\u00f3n, iniciativas de recaudaci\u00f3n de fondos y eventos. No tienes Facebook? \u00a1Tambi\u00e9n puedes seguirnos en Instagram<\/a>!<\/p>\n

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Adem\u00e1s de la informaci\u00f3n disponible en la secci\u00f3n de Familias de nuestra p\u00e1gina web, hemos recopilado a continuaci\u00f3n una lista de otros recursos \u00fatiles, que incluyen desde oportunidades para conectar con otras familias afectadas por la condici\u00f3n relacionada con CLCN4 hasta fichas informativas sobre la condici\u00f3n relacionada con CLCN4 que puedes compartir con tu m\u00e9dico y profesionales sanitarios.<\/p>\n","protected":false},"author":2,"featured_media":7022,"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-2968","page","type-page","status-publish","has-post-thumbnail","hentry"],"_links":{"self":[{"href":"https:\/\/cureclcn4.org\/es\/wp-json\/wp\/v2\/pages\/2968","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/cureclcn4.org\/es\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/cureclcn4.org\/es\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/cureclcn4.org\/es\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/cureclcn4.org\/es\/wp-json\/wp\/v2\/comments?post=2968"}],"version-history":[{"count":21,"href":"https:\/\/cureclcn4.org\/es\/wp-json\/wp\/v2\/pages\/2968\/revisions"}],"predecessor-version":[{"id":7072,"href":"https:\/\/cureclcn4.org\/es\/wp-json\/wp\/v2\/pages\/2968\/revisions\/7072"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/cureclcn4.org\/es\/wp-json\/wp\/v2\/media\/7022"}],"wp:attachment":[{"href":"https:\/\/cureclcn4.org\/es\/wp-json\/wp\/v2\/media?parent=2968"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}