{"id":2127,"date":"2021-11-19T15:27:33","date_gmt":"2021-11-19T15:27:33","guid":{"rendered":"https:\/\/cureclcn4.org\/inicio\/"},"modified":"2026-02-09T12:25:44","modified_gmt":"2026-02-09T12:25:44","slug":"inicio","status":"publish","type":"page","link":"https:\/\/cureclcn4.org\/es\/","title":{"rendered":"Inicio"},"content":{"rendered":"<p>[et_pb_section fb_built=\u00bb1&#8243; admin_label=\u00bbHeader\u00bb _builder_version=\u00bb4.16&#8243; background_color=\u00bb#f7f9f9&#8243; parallax=\u00bbon\u00bb min_height=\u00bb587.4px\u00bb custom_padding=\u00bb||29px|||\u00bb collapsed=\u00bboff\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_row column_structure=\u00bb1_2,1_2&#8243; _builder_version=\u00bb4.27.4&#8243; min_height=\u00bb202.2px\u00bb custom_margin=\u00bb0px|auto|0px|auto|false|false\u00bb custom_padding=\u00bb0px||0px||false|false\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_column type=\u00bb1_2&#8243; _builder_version=\u00bb4.16&#8243; custom_padding=\u00bb40px||40px||false|false\u00bb custom_padding_tablet=\u00bb0px||\u00bb custom_padding_phone=\u00bb\u00bb custom_padding_last_edited=\u00bbon|desktop\u00bb global_colors_info=\u00bb{}\u00bb padding_tablet=\u00bb0px||\u00bb padding_last_edited=\u00bbon|tablet\u00bb custom_padding__hover=\u00bb|||\u00bb padding_phone=\u00bb0px||\u00bb][et_pb_text _builder_version=\u00bb4.16&#8243; text_font=\u00bb||||||||\u00bb text_line_height=\u00bb2em\u00bb header_font=\u00bbFaustina|600|||||||\u00bb header_text_color=\u00bb#0e7162&#8243; header_font_size=\u00bb60px\u00bb header_line_height=\u00bb1.3em\u00bb custom_margin=\u00bb-19px|||||\u00bb header_font_size_tablet=\u00bb50px\u00bb header_font_size_phone=\u00bb40px\u00bb header_font_size_last_edited=\u00bbon|phone\u00bb global_colors_info=\u00bb{}\u00bb]<\/p>\n<h1>Let&#8217;s cure CLCN4<\/h1>\n<p>[\/et_pb_text][et_pb_text _builder_version=\u00bb4.27.4&#8243; text_font=\u00bb||||||||\u00bb text_font_size=\u00bb18px\u00bb text_line_height=\u00bb2em\u00bb header_font=\u00bbFaustina||||||||\u00bb header_text_color=\u00bb#0e7162&#8243; header_font_size=\u00bb60px\u00bb header_line_height=\u00bb1.3em\u00bb custom_margin=\u00bb||17px|||\u00bb global_colors_info=\u00bb{}\u00bb]<\/p>\n<p style=\"text-align: justify;\">Somos una organizaci\u00f3n ben\u00e9fica registrada cuyo objetivo es proporcionar apoyo, concienciar y financiar la investigaci\u00f3n m\u00e9dica para encontrar tratamientos eficaces para las enfermedades relacionadas con el gen CLCN4.<\/p>\n<p>[\/et_pb_text][et_pb_text _builder_version=\u00bb4.27.4&#8243; text_font=\u00bb||||||||\u00bb text_font_size=\u00bb16px\u00bb text_line_height=\u00bb2em\u00bb header_font=\u00bbFaustina||||||||\u00bb header_text_color=\u00bb#0e7162&#8243; header_font_size=\u00bb60px\u00bb header_line_height=\u00bb1.3em\u00bb custom_margin=\u00bb||0px||false|false\u00bb global_colors_info=\u00bb{}\u00bb]<\/p>\n<p style=\"text-align: justify;\">El CLCN4 es una enfermedad gen\u00e9tica rara que causa discapacidad intelectual y otros problemas como epilepsia, trastornos del comportamiento, trastornos del movimiento y microcefalia.<\/p>\n<p>[\/et_pb_text][et_pb_code _builder_version=\u00bb4.27.4&#8243; _module_preset=\u00bbdefault\u00bb global_colors_info=\u00bb{}\u00bb]<!-- [et_pb_line_break_holder] --><!-- [et_pb_line_break_holder] --><\/p>\n<style><!-- [et_pb_line_break_holder] -->  \/* layout for both buttons *\/<!-- [et_pb_line_break_holder] -->  .buttons-inline {<!-- [et_pb_line_break_holder] -->    display: flex;<!-- [et_pb_line_break_holder] -->    justify-content: center; \/* or flex-start if you prefer left alignment *\/<!-- [et_pb_line_break_holder] -->    align-items: center;<!-- [et_pb_line_break_holder] -->    gap: 14px;<!-- [et_pb_line_break_holder] -->    flex-wrap: wrap;<!-- [et_pb_line_break_holder] -->    margin-top: 25px; \/* adds top margin for spacing under paragraph *\/<!-- [et_pb_line_break_holder] -->  }<!-- 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noreferrer\"><!-- [et_pb_line_break_holder] -->  Registro de pacientes<!-- [et_pb_line_break_holder] -->  <\/a><!-- [et_pb_line_break_holder] --><\/div>\n<p><!-- [et_pb_line_break_holder] -->[\/et_pb_code][\/et_pb_column][et_pb_column type=\u00bb1_2&#8243; _builder_version=\u00bb4.16&#8243; custom_padding=\u00bb|||\u00bb global_colors_info=\u00bb{}\u00bb custom_padding__hover=\u00bb|||\u00bb][et_pb_image src=\u00bbhttps:\/\/cureclcn4.org\/wp-content\/uploads\/2021\/01\/cureCLCN4_hompage.jpg\u00bb alt=\u00bbCondici\u00f3n gen\u00e9tica CLCN4&#8243; title_text=\u00bbcureCLCN4_hompage\u00bb show_bottom_space=\u00bboff\u00bb align_tablet=\u00bbcenter\u00bb align_phone=\u00bb\u00bb align_last_edited=\u00bbon|desktop\u00bb _builder_version=\u00bb4.27.5&#8243; custom_margin=\u00bb10px||||false|false\u00bb animation_style=\u00bbslide\u00bb animation_direction=\u00bbright\u00bb animation_intensity_slide=\u00bb2%\u00bb hover_enabled=\u00bb0&#8243; global_colors_info=\u00bb{}\u00bb 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use_custom_width=\u00bbon\u00bb custom_width_px=\u00bb1200px\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_column type=\u00bb1_4&#8243; _builder_version=\u00bb4.16&#8243; custom_padding=\u00bb|||\u00bb global_colors_info=\u00bb{}\u00bb custom_padding__hover=\u00bb|||\u00bb][et_pb_blurb title=\u00bbInvestigaci\u00f3n cient\u00edfica\u00bb _builder_version=\u00bb4.27.4&#8243; header_font=\u00bb|700|||||||\u00bb header_font_size=\u00bb17px\u00bb header_line_height=\u00bb2em\u00bb body_line_height=\u00bb2em\u00bb text_orientation=\u00bbjustified\u00bb locked=\u00bboff\u00bb global_colors_info=\u00bb{}\u00bb]<\/p>\n<p>Financiamos y colaboramos en la investigaci\u00f3n del CLCN4 en todo el mundo, con el objetivo de descubrir c\u00f3mo funciona el gen y c\u00f3mo su alteraci\u00f3n causa s\u00edntomas neurol\u00f3gicos. Poniendo en contacto a investigadores y familias, estamos construyendo el camino hacia terapias eficaces. <\/p>\n<p>[\/et_pb_blurb][\/et_pb_column][et_pb_column type=\u00bb1_4&#8243; _builder_version=\u00bb4.16&#8243; custom_padding=\u00bb|||\u00bb global_colors_info=\u00bb{}\u00bb custom_padding__hover=\u00bb|||\u00bb][et_pb_blurb title=\u00bbApoyo a las familias\u00bb _builder_version=\u00bb4.27.4&#8243; header_font=\u00bb|700|||||||\u00bb header_font_size=\u00bb16px\u00bb header_line_height=\u00bb2em\u00bb body_line_height=\u00bb2em\u00bb text_orientation=\u00bbjustified\u00bb locked=\u00bboff\u00bb global_colors_info=\u00bb{}\u00bb]<\/p>\n<p>Las familias afectadas por variantes del gen CLCN4 a menudo se enfrentan a retos como retraso en el desarrollo, convulsiones y diferencias de aprendizaje o de comportamiento. Estamos aqu\u00ed para ofrecer orientaci\u00f3n, comunidad y apoyo, ayudando a las familias a navegar por el diagn\u00f3stico. <\/p>\n<p>[\/et_pb_blurb][\/et_pb_column][et_pb_column type=\u00bb1_4&#8243; _builder_version=\u00bb4.16&#8243; _module_preset=\u00bbdefault\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_blurb title=\u00bbConcienciaci\u00f3n\u00bb _builder_version=\u00bb4.27.4&#8243; header_font=\u00bb|700|||||||\u00bb header_font_size=\u00bb16px\u00bb header_line_height=\u00bb2em\u00bb body_line_height=\u00bb2em\u00bb text_orientation=\u00bbjustified\u00bb width=\u00bb100%\u00bb global_colors_info=\u00bb{}\u00bb]<\/p>\n<p>Concienciamos a m\u00e9dicos, cient\u00edficos y a la comunidad en general sobre la afecci\u00f3n del neurodesarrollo <em>relacionada con el CLCN4<\/em>, mejorando el diagn\u00f3stico, conectando a las familias y acelerando la investigaci\u00f3n hacia tratamientos.<\/p>\n<p>[\/et_pb_blurb][\/et_pb_column][et_pb_column type=\u00bb1_4&#8243; _builder_version=\u00bb4.16&#8243; custom_padding=\u00bb|||\u00bb global_colors_info=\u00bb{}\u00bb custom_padding__hover=\u00bb|||\u00bb][et_pb_blurb title=\u00bbAy\u00fadanos\u00bb _builder_version=\u00bb4.16&#8243; header_font=\u00bb|700|||||||\u00bb header_font_size=\u00bb16px\u00bb header_line_height=\u00bb2em\u00bb body_line_height=\u00bb2em\u00bb text_orientation=\u00bbjustified\u00bb custom_margin=\u00bb-50px|-100px|0px|\u00bb custom_margin_tablet=\u00bb0px|-50px|0px|-50px|true|true\u00bb custom_margin_phone=\u00bb\u00bb custom_margin_last_edited=\u00bbon|tablet\u00bb custom_padding=\u00bb30px|30px|30px|30px|true|true\u00bb animation_style=\u00bbslide\u00bb animation_direction=\u00bbleft\u00bb animation_intensity_slide=\u00bb2%\u00bb border_radii=\u00bbon|3px|3px|3px|3px\u00bb border_width_all=\u00bb20px\u00bb border_color_all=\u00bb#26c699&#8243; box_shadow_style=\u00bbpreset3&#8243; 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 locked=\u00bboff\u00bb global_colors_info=\u00bb{}\u00bb]<\/p>\n<p>\u00danete a nosotros desde cualquier parte del mundo para ayudar a las personas y familias que viven con <em>CLCN4<\/em>. Haz un donativo, recauda fondos u ofrece voluntariamente tu tiempo o experiencia. <\/p>\n<p>[\/et_pb_blurb][et_pb_button button_url=\u00bbhttps:\/\/cureclcn4.org\/es\/ponte-en-contacto\/\u00bb button_text=\u00bbPonte en contacto\u00bb button_alignment=\u00bbright\u00bb _builder_version=\u00bb4.16&#8243; custom_button=\u00bbon\u00bb button_text_size=\u00bb14px\u00bb button_text_color=\u00bb#ffffff\u00bb button_bg_color=\u00bb#26c699&#8243; button_border_color=\u00bbrgba(0,0,0,0)\u00bb button_border_radius=\u00bb3px\u00bb button_letter_spacing=\u00bb1px\u00bb button_font=\u00bb|700||on|||||\u00bb custom_margin=\u00bb-3px|-100px||\u00bb custom_margin_tablet=\u00bb-3px|-50px||\u00bb custom_margin_phone=\u00bb\u00bb custom_margin_last_edited=\u00bbon|desktop\u00bb custom_padding=\u00bb12px||12px||true|true\u00bb locked=\u00bboff\u00bb global_colors_info=\u00bb{}\u00bb][\/et_pb_button][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=\u00bb1&#8243; admin_label=\u00bbVideo\u00bb _builder_version=\u00bb4.16&#8243; 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header_2_font_size=\u00bb42px\u00bb header_2_line_height=\u00bb1.4em\u00bb max_width=\u00bb450px\u00bb header_2_font_size_tablet=\u00bb32px\u00bb header_2_font_size_phone=\u00bb22px\u00bb header_2_font_size_last_edited=\u00bbon|desktop\u00bb global_colors_info=\u00bb{}\u00bb]<\/p>\n<h2>Registro de pacientes<\/h2>\n<p style=\"text-align: justify;\">El registro de pacientes con CLCN4, gestionado por Simons Searchlight, ayuda a los investigadores y a las familias a trabajar juntos para avanzar hacia el desarrollo de tratamientos. Al recopilar informaci\u00f3n sobre las personas con afecciones relacionadas con el CLCN4, podemos comprender mejor c\u00f3mo afecta la enfermedad a diferentes individuos y apoyar futuras investigaciones y ensayos cl\u00ednicos. <\/p>\n<p>[\/et_pb_text][et_pb_button button_url=\u00bbhttps:\/\/cureclcn4.org\/es\/registro-de-pacientes\/\u00bb button_text=\u00bb\u00danete al registro de pacientes\u00bb button_alignment=\u00bbleft\u00bb _builder_version=\u00bb4.16&#8243; _module_preset=\u00bb88084d0d-b45c-415e-b197-2d1c061bed62&#8243; button_text_size=\u00bb18px\u00bb button_border_color=\u00bb#26c699&#8243; button_use_icon=\u00bboff\u00bb locked=\u00bboff\u00bb global_colors_info=\u00bb{}\u00bb][\/et_pb_button][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=\u00bb1&#8243; admin_label=\u00bbAbout Us\u00bb _builder_version=\u00bb4.16&#8243; background_color=\u00bb#f7f9f9&#8243; custom_width_px__hover=\u00bb1080px\u00bb custom_width_px__hover_enabled=\u00bb1080px\u00bb custom_width_percent__hover=\u00bb80%\u00bb custom_width_percent__hover_enabled=\u00bb80%\u00bb collapsed=\u00bboff\u00bb global_colors_info=\u00bb{}\u00bb make_fullwidth__hover=\u00bboff\u00bb make_fullwidth__hover_enabled=\u00bboff\u00bb use_custom_width__hover=\u00bboff\u00bb use_custom_width__hover_enabled=\u00bboff\u00bb width_unit__hover=\u00bbon\u00bb width_unit__hover_enabled=\u00bbon\u00bb make_equal__hover=\u00bboff\u00bb make_equal__hover_enabled=\u00bboff\u00bb use_custom_gutter__hover=\u00bboff\u00bb use_custom_gutter__hover_enabled=\u00bboff\u00bb gutter_width__hover=\u00bb3&#8243; 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box_shadow_style=\u00bbpreset3&#8243; 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 locked=\u00bboff\u00bb global_colors_info=\u00bb{}\u00bb header_2_font_size__hover=\u00bb26px\u00bb header_2_font_size__hover_enabled=\u00bb26px\u00bb header_2_letter_spacing__hover=\u00bb0px\u00bb header_2_letter_spacing__hover_enabled=\u00bb0px\u00bb header_2_line_height__hover=\u00bb1em\u00bb header_2_line_height__hover_enabled=\u00bb1em\u00bb header_2_text_shadow_style__hover=\u00bbnone\u00bb header_2_text_shadow_style__hover_enabled=\u00bbnone\u00bb header_2_text_shadow_color__hover=\u00bbrgba(0,0,0,0.4)\u00bb header_2_text_shadow_color__hover_enabled=\u00bbrgba(0,0,0,0.4)\u00bb]<\/p>\n<h3>Lo que hacemos<\/h3>\n<p>Cure CLCN4 se compromete a encontrar opciones de tratamiento viables para las familias afectadas por las variantes CLCN4. Algunas de las cosas que apoyamos incluyen: <\/p>\n<p>&#8211; La identificaci\u00f3n de proyectos de investigaci\u00f3n adecuados.<\/p>\n<p>&#8211; Creaci\u00f3n y mantenimiento de un registro de pacientes.<\/p>\n<p>&#8211; Facilitaci\u00f3n de una comunidad de familias afectadas<\/p>\n<p>&nbsp;<\/p>\n<p>[\/et_pb_text][\/et_pb_column][et_pb_column type=\u00bb1_2&#8243; _builder_version=\u00bb4.16&#8243; custom_padding=\u00bb|||\u00bb custom_padding_tablet=\u00bb|||||true\u00bb custom_padding_last_edited=\u00bboff|desktop\u00bb global_colors_info=\u00bb{}\u00bb padding_tablet=\u00bb|||||true\u00bb padding_last_edited=\u00bboff|desktop\u00bb custom_padding__hover=\u00bb|||\u00bb][et_pb_text _builder_version=\u00bb4.16&#8243; text_font=\u00bb||||||||\u00bb text_line_height=\u00bb2em\u00bb header_font=\u00bb||||||||\u00bb header_3_font=\u00bbFaustina|600|||||||\u00bb header_3_text_color=\u00bb#0e7162&#8243; header_3_font_size=\u00bb26px\u00bb header_3_line_height=\u00bb1.2em\u00bb max_width=\u00bb600px\u00bb header_3_font_size_tablet=\u00bb22px\u00bb header_3_font_size_phone=\u00bb18px\u00bb header_3_font_size_last_edited=\u00bbon|tablet\u00bb locked=\u00bboff\u00bb global_colors_info=\u00bb{}\u00bb header_2_font_size__hover=\u00bb26px\u00bb header_2_font_size__hover_enabled=\u00bb26px\u00bb header_2_letter_spacing__hover=\u00bb0px\u00bb header_2_letter_spacing__hover_enabled=\u00bb0px\u00bb header_2_line_height__hover=\u00bb1em\u00bb header_2_line_height__hover_enabled=\u00bb1em\u00bb header_2_text_shadow_style__hover=\u00bbnone\u00bb header_2_text_shadow_style__hover_enabled=\u00bbnone\u00bb header_2_text_shadow_color__hover=\u00bbrgba(0,0,0,0.4)\u00bb header_2_text_shadow_color__hover_enabled=\u00bbrgba(0,0,0,0.4)\u00bb]<\/p>\n<h3>Nuestra historia<\/h3>\n<p>Cure CLCN4 fue fundada por una familia con un hijo afectado. Lee nuestra historia <a href=\"https:\/\/cureclcn4.org\/367-2\/\">aqu\u00ed.<\/a> <\/p>\n<p>Nuestro viaje es una experiencia de aprendizaje continuo sobre c\u00f3mo abrir nuevos caminos para tratamientos revolucionarios para pacientes, familias e investigadores.<\/p>\n<p>[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=\u00bb1&#8243; admin_label=\u00bbFeatures\u00bb _builder_version=\u00bb4.16&#8243; collapsed=\u00bboff\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_row column_structure=\u00bb1_3,2_3&#8243; _builder_version=\u00bb4.16&#8243; max_width=\u00bb1280px\u00bb use_custom_width=\u00bbon\u00bb custom_width_px=\u00bb1280px\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_column type=\u00bb1_3&#8243; _builder_version=\u00bb4.16&#8243; custom_padding=\u00bb|||\u00bb global_colors_info=\u00bb{}\u00bb custom_padding__hover=\u00bb|||\u00bb][et_pb_text _builder_version=\u00bb4.16&#8243; text_font=\u00bb||||||||\u00bb text_line_height=\u00bb2em\u00bb header_font=\u00bb||||||||\u00bb header_2_font=\u00bbFaustina|600|||||||\u00bb header_2_text_color=\u00bb#0e7162&#8243; 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Participe.<\/h2>\n<p>[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row _builder_version=\u00bb4.16&#8243; background_color=\u00bb#ffffff\u00bb max_width=\u00bb850px\u00bb custom_padding=\u00bb60px|60px|60px|60px|true|true\u00bb animation_style=\u00bbslide\u00bb animation_direction=\u00bbtop\u00bb animation_intensity_slide=\u00bb2%\u00bb box_shadow_style=\u00bbpreset3&#8243; 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=\u00bb850px\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_column type=\u00bb4_4&#8243; _builder_version=\u00bb4.16&#8243; custom_padding=\u00bb|||\u00bb global_colors_info=\u00bb{}\u00bb custom_padding__hover=\u00bb|||\u00bb][et_pb_contact_form email=\u00bbinfo@cureclcn4.org\u00bb success_message=\u00bbGracias por ponerte en contacto con nosotros. 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