{"id":7509,"date":"2026-01-06T19:19:02","date_gmt":"2026-01-06T19:19:02","guid":{"rendered":"https:\/\/cureclcn4.org\/missione-di-ricerca\/"},"modified":"2026-01-06T19:25:44","modified_gmt":"2026-01-06T19:25:44","slug":"missione-di-ricerca","status":"publish","type":"page","link":"https:\/\/cureclcn4.org\/it\/missione-di-ricerca\/","title":{"rendered":"Missione di ricerca"},"content":{"rendered":"<p>[et_pb_section fb_built=&#8221;1&#8243; admin_label=&#8221;Video&#8221; _builder_version=&#8221;4.16&#8243; background_color=&#8221;#3a897e&#8221; custom_padding=&#8221;0|1px|0|0px|false|false&#8221; collapsed=&#8221;off&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_row _builder_version=&#8221;4.16&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column type=&#8221;4_4&#8243; _builder_version=&#8221;4.16&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_divider show_divider=&#8221;off&#8221; _builder_version=&#8221;4.16&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][\/et_pb_divider][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=&#8221;1&#8243; admin_label=&#8221;Header&#8221; _builder_version=&#8221;4.16&#8243; background_color=&#8221;#f7f9f9&#8243; parallax=&#8221;on&#8221; collapsed=&#8221;off&#8221; global_colors_info=&#8221;{}&#8221; theme_builder_area=&#8221;post_content&#8221;][et_pb_row column_structure=&#8221;1_2,1_2&#8243; _builder_version=&#8221;4.27.4&#8243; custom_padding=&#8221;0px|||||&#8221; hover_enabled=&#8221;0&#8243; global_colors_info=&#8221;{}&#8221; theme_builder_area=&#8221;post_content&#8221; sticky_enabled=&#8221;0&#8243; make_equal=&#8221;on&#8221;][et_pb_column type=&#8221;1_2&#8243; _builder_version=&#8221;4.16&#8243; custom_padding=&#8221;80px||40px|&#8221; custom_padding_tablet=&#8221;0px||&#8221; custom_padding_phone=&#8221;&#8221; custom_padding_last_edited=&#8221;on|tablet&#8221; hover_enabled=&#8221;0&#8243; global_colors_info=&#8221;{}&#8221; padding_tablet=&#8221;0px||&#8221; padding_last_edited=&#8221;on|tablet&#8221; custom_padding__hover=&#8221;|||&#8221; padding_phone=&#8221;0px||&#8221; theme_builder_area=&#8221;post_content&#8221; sticky_enabled=&#8221;0&#8243;][et_pb_text _builder_version=&#8221;4.27.4&#8243; text_font=&#8221;||||||||&#8221; text_line_height=&#8221;2em&#8221; header_font=&#8221;Faustina|600|||||||&#8221; header_text_color=&#8221;#0e7162&#8243; header_font_size=&#8221;60px&#8221; header_line_height=&#8221;1.3em&#8221; custom_margin=&#8221;0px||||false|false&#8221; hover_enabled=&#8221;0&#8243; header_font_size_tablet=&#8221;50px&#8221; header_font_size_phone=&#8221;40px&#8221; header_font_size_last_edited=&#8221;on|phone&#8221; global_colors_info=&#8221;{}&#8221; theme_builder_area=&#8221;post_content&#8221; sticky_enabled=&#8221;0&#8243; min_height=&#8221;69px&#8221;]<\/p>\n<h1>Missione di ricerca<\/h1>\n<p>[\/et_pb_text][et_pb_text _builder_version=&#8221;4.27.4&#8243; text_font=&#8221;||||||||&#8221; text_font_size=&#8221;18px&#8221; text_line_height=&#8221;1.8em&#8221; header_font=&#8221;Faustina||||||||&#8221; header_text_color=&#8221;#0e7162&#8243; header_font_size=&#8221;60px&#8221; header_line_height=&#8221;1.3em&#8221; custom_margin=&#8221;||17px|||&#8221; hover_enabled=&#8221;0&#8243; global_colors_info=&#8221;{}&#8221; theme_builder_area=&#8221;post_content&#8221; sticky_enabled=&#8221;0&#8243;]<\/p>\n<p style=\"text-align: justify;\">La condizione legata alla CLCN4 \u00e8 rara, complessa e ancora poco conosciuta. Le famiglie vivono con domande senza risposta, una guida limitata e l&#8217;incertezza su ci\u00f2 che le aspetta. <\/p>\n<p>[\/et_pb_text][et_pb_text _builder_version=&#8221;4.27.4&#8243; text_font=&#8221;||||||||&#8221; text_font_size=&#8221;24px&#8221; text_line_height=&#8221;2em&#8221; header_font=&#8221;Faustina||||||||&#8221; header_text_color=&#8221;#0e7162&#8243; header_font_size=&#8221;60px&#8221; header_line_height=&#8221;1.3em&#8221; custom_margin=&#8221;||17px|||&#8221; hover_enabled=&#8221;0&#8243; global_colors_info=&#8221;{}&#8221; theme_builder_area=&#8221;post_content&#8221; sticky_enabled=&#8221;0&#8243;]<\/p>\n<p style=\"text-align: justify;\"><strong>Cure CLCN4 \u00e8 qui per cambiare le cose.<\/strong><\/p>\n<p>[\/et_pb_text][et_pb_text _builder_version=&#8221;4.27.4&#8243; text_font=&#8221;||||||||&#8221; text_font_size=&#8221;18px&#8221; text_line_height=&#8221;1.8em&#8221; header_font=&#8221;Faustina||||||||&#8221; header_text_color=&#8221;#0e7162&#8243; header_font_size=&#8221;60px&#8221; header_line_height=&#8221;1.3em&#8221; custom_margin=&#8221;||17px|||&#8221; hover_enabled=&#8221;0&#8243; global_colors_info=&#8221;{}&#8221; theme_builder_area=&#8221;post_content&#8221; sticky_enabled=&#8221;0&#8243;]<\/p>\n<p style=\"text-align: justify;\">Promuoviamo la ricerca e le partnership globali necessarie per comprendere la CLCN4 e costruire il percorso verso i trattamenti futuri. La nostra missione \u00e8 trasformare la scienza emergente in un cambiamento significativo per le famiglie di tutto il mondo. <\/p>\n<p>[\/et_pb_text][\/et_pb_column][et_pb_column type=&#8221;1_2&#8243; _builder_version=&#8221;4.27.4&#8243; custom_padding=&#8221;|||&#8221; hover_enabled=&#8221;0&#8243; global_colors_info=&#8221;{}&#8221; custom_padding__hover=&#8221;|||&#8221; theme_builder_area=&#8221;post_content&#8221; sticky_enabled=&#8221;0&#8243;][et_pb_image src=&#8221;https:\/\/cureclcn4.org\/wp-content\/uploads\/2025\/11\/Research_Mission_hero_section-scaled.png&#8221; show_bottom_space=&#8221;off&#8221; align_tablet=&#8221;center&#8221; align_phone=&#8221;&#8221; align_last_edited=&#8221;on|tablet&#8221; _builder_version=&#8221;4.27.4&#8243; custom_margin=&#8221;0px||||false|false&#8221; animation_style=&#8221;slide&#8221; animation_direction=&#8221;right&#8221; animation_intensity_slide=&#8221;2%&#8221; hover_enabled=&#8221;0&#8243; global_colors_info=&#8221;{}&#8221; theme_builder_area=&#8221;post_content&#8221; 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header_2_line_height=&#8221;1.4em&#8221; text_orientation=&#8221;center&#8221; max_width=&#8221;850px&#8221; module_alignment=&#8221;center&#8221; text_font_size_tablet=&#8221;&#8221; text_font_size_phone=&#8221;17px&#8221; text_font_size_last_edited=&#8221;on|phone&#8221; header_2_font_size_tablet=&#8221;32px&#8221; header_2_font_size_phone=&#8221;22px&#8221; header_2_font_size_last_edited=&#8221;on|desktop&#8221; locked=&#8221;off&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h2><span style=\"font-size: xx-large;\">Il nostro obiettivo \u00e8 quello di&#8230;<\/span><\/h2>\n<p>[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row custom_padding_last_edited=&#8221;on|phone&#8221; _builder_version=&#8221;4.16&#8243; background_color=&#8221;#ffffff&#8221; max_width=&#8221;1200px&#8221; custom_padding=&#8221;29px|80px|28px|80px|false|false&#8221; custom_padding_tablet=&#8221;|80px||80px|false|true&#8221; custom_padding_phone=&#8221;40px|30px||30px||true&#8221; box_shadow_style=&#8221;preset3&#8243; box_shadow_vertical=&#8221;40px&#8221; box_shadow_blur=&#8221;100px&#8221; box_shadow_spread=&#8221;-30px&#8221; box_shadow_color=&#8221;rgba(0,0,0,0.22)&#8221; use_custom_width=&#8221;on&#8221; custom_width_px=&#8221;1200px&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column type=&#8221;4_4&#8243; _builder_version=&#8221;4.16&#8243; custom_padding=&#8221;|||&#8221; global_colors_info=&#8221;{}&#8221; custom_padding__hover=&#8221;|||&#8221;][et_pb_blurb content_max_width=&#8221;800px&#8221; _builder_version=&#8221;4.27.4&#8243; header_font=&#8221;|700|||||||&#8221; header_font_size=&#8221;16px&#8221; header_line_height=&#8221;2em&#8221; body_font_size=&#8221;17px&#8221; body_line_height=&#8221;2em&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<ul>\n<li style=\"text-align: justify;\">Fornire alla comunit\u00e0 scientifica e clinica i necessari <a href=\"https:\/\/cureclcn4.org\/research-tools\/\"><strong>strumenti di ricerca<\/strong><\/a> per far progredire la nostra comprensione delle condizioni <em>legate alla CLCN4<\/em>.<\/li>\n<\/ul>\n<ul style=\"text-align: justify;\">\n<li><strong>Identificare e <a href=\"https:\/\/cureclcn4.org\/grant-calls\/\">finanziare<\/a> progetti di ricerca<\/strong> che abbiano il potenziale per contribuire alle attuali conoscenze sulla biologia e sui pato-meccanismi coinvolti nelle condizioni<em> legate alla CLCN4<\/em>.<\/li>\n<\/ul>\n<ul style=\"text-align: justify;\">\n<li>Aiutare a creare una <strong><a href=\"https:\/\/cureclcn4.org\/it\/rete-di-ricerca-clcn4\/\">rete internazionale<\/a> di ricercatori e clinici<\/strong> coinvolti nella ricerca sulle condizioni <em>legate alla CLCN4<\/em> e\/o nella gestione di individui affetti da questa patologia.<\/li>\n<\/ul>\n<ul style=\"text-align: justify;\">\n<li>Sostenere l&#8217;<strong>identificazione dei pazienti<\/strong> con condizioni <em>legate alla CLCN4<\/em> collaborando con i laboratori di genetica, sia nel Regno Unito che all&#8217;estero, per aggiungere la <em>CLCN4<\/em> ai pannelli dei test genetici e fornire alle famiglie le risorse disponibili.<\/li>\n<\/ul>\n<ul style=\"text-align: justify;\">\n<li>Sostenere gli sforzi per istituire e mantenere un <strong> <a href=\"https:\/\/cureclcn4.org\/it\/registro-dei-pazienti\/\">registro ufficiale dei pazienti con<\/a> <em>CLCN4<\/em><\/strong>, con l&#8217;obiettivo finale di costruire una serie di dati sulla storia naturale.<\/li>\n<\/ul>\n<ul>\n<li style=\"text-align: justify;\"><strong>Sensibilizzare la<\/strong> comunit\u00e0 scientifica e medica sulle condizioni <em>legate alla CLCN4<\/em> e promuovere l&#8217;impegno della ricerca su questa condizione.<\/li>\n<\/ul>\n<p>[\/et_pb_blurb][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=&#8221;1_2,1_2&#8243; 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