{"id":6783,"date":"2025-06-25T10:42:30","date_gmt":"2025-06-25T10:42:30","guid":{"rendered":"https:\/\/cureclcn4.org\/conferenza-scientifica-cure-clcn4-punti-salienti-per-le-famiglie\/"},"modified":"2025-06-25T10:42:32","modified_gmt":"2025-06-25T10:42:32","slug":"conferenza-scientifica-cure-clcn4-punti-salienti-per-le-famiglie","status":"publish","type":"post","link":"https:\/\/cureclcn4.org\/it\/conferenza-scientifica-cure-clcn4-punti-salienti-per-le-famiglie\/","title":{"rendered":"Conferenza scientifica Cure CLCN4 &#8211; Punti salienti per le famiglie"},"content":{"rendered":"<p>[et_pb_section fb_built=&#8221;1&#8243; admin_label=&#8221;Get Involved&#8221; _builder_version=&#8221;4.24.2&#8243; background_color=&#8221;#FFFFFF&#8221; background_image=&#8221;https:\/\/cureclcn4.org\/wp-content\/uploads\/2020\/08\/charity-13.png&#8221; parallax=&#8221;on&#8221; width=&#8221;100%&#8221; custom_padding=&#8221;0|0px|0px|0px|false|false&#8221; use_custom_width=&#8221;on&#8221; custom_width_px=&#8221;1200px&#8221; 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text_font_size=&#8221;5px&#8221; text_line_height=&#8221;2em&#8221; header_font=&#8221;Faustina|600|||||||&#8221; header_text_color=&#8221;#0e7162&#8243; header_font_size=&#8221;57px&#8221; header_line_height=&#8221;1.3em&#8221; width=&#8221;94.4%&#8221; min_height=&#8221;83px&#8221; custom_margin=&#8221;-19px|||19px|false|false&#8221; 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;]<\/p>\n<h1 style=\"text-align: center;\"><\/h1>\n<h1 style=\"text-align: center;\">Conferenza scientifica Cure CLCN4 &#8211; Punti salienti per le famiglie<\/h1>\n<p>[\/et_pb_text][et_pb_image src=&#8221;https:\/\/cureclcn4.org\/wp-content\/uploads\/2025\/06\/04258F6F-F016-42AE-9A6D-75C73A4A5351_1_105_c-copy.jpeg&#8221; title_text=&#8221;04258F6F-F016-42AE-9A6D-75C73A4A5351_1_105_c copy&#8221; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][\/et_pb_image][et_pb_text _builder_version=&#8221;4.27.4&#8243; text_font=&#8221;||||||||&#8221; text_font_size=&#8221;20px&#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; text_orientation=&#8221;justified&#8221; min_height=&#8221;52px&#8221; custom_margin=&#8221;|5px||5px|false|true&#8221; custom_padding=&#8221;|10px||10px|false|true&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<p style=\"font-weight: 400;\"><span>Di recente abbiamo riunito scienziati e clinici di spicco per condividere le ultime ricerche e idee per comprendere meglio le condizioni <em>legate alla CLCN4<\/em>. <\/span><span>Ecco alcuni punti chiave della conferenza, in parole povere:<\/span><\/p>\n<p style=\"text-align: center;\">[\/et_pb_text][et_pb_divider color=&#8221;#12876f&#8221; divider_weight=&#8221;5px&#8221; _builder_version=&#8221;4.25.0&#8243; _module_preset=&#8221;default&#8221; min_height=&#8221;6px&#8221; global_colors_info=&#8221;{}&#8221;][\/et_pb_divider][\/et_pb_column][\/et_pb_row][et_pb_row _builder_version=&#8221;4.27.4&#8243; background_color=&#8221;#ffffff&#8221; width=&#8221;100%&#8221; max_width=&#8221;1090px&#8221; min_height=&#8221;41px&#8221; custom_margin=&#8221;10px||10px||false|false&#8221; custom_padding=&#8221;0px||0px||false|false&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column type=&#8221;4_4&#8243; admin_label=&#8221;Colonna&#8221; _builder_version=&#8221;4.27.4&#8243; custom_padding=&#8221;0px||0px||false|false&#8221; custom_padding_tablet=&#8221;0px||&#8221; custom_padding_phone=&#8221;&#8221; custom_padding_last_edited=&#8221;on|desktop&#8221; 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;][et_pb_text _builder_version=&#8221;4.27.4&#8243; text_font=&#8221;||||||||&#8221; text_font_size=&#8221;20px&#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; header_2_font=&#8221;|700|||||||&#8221; header_2_text_color=&#8221;#0e7162&#8243; header_2_font_size=&#8221;30px&#8221; text_orientation=&#8221;center&#8221; module_alignment=&#8221;center&#8221; min_height=&#8221;41px&#8221; custom_margin=&#8221;||0px|0px|false|false&#8221; custom_padding=&#8221;|25px|0px|25px|false|false&#8221; 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;]<\/p>\n<h2 style=\"text-align: left;\">Cosa stiamo imparando sul gene <em>CLCN4<\/em> <\/h2>\n<p>[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=&#8221;1_2,1_2&#8243; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; background_color=&#8221;#FFFFFF&#8221; width=&#8221;100%&#8221; min_height=&#8221;376px&#8221; custom_margin=&#8221;0px||0px||false|false&#8221; custom_padding=&#8221;0px|0px|0px||false|false&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column type=&#8221;1_2&#8243; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; custom_padding=&#8221;0px||0px||false|false&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_text _builder_version=&#8221;4.27.4&#8243; text_font=&#8221;||||||||&#8221; text_font_size=&#8221;16px&#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; text_orientation=&#8221;justified&#8221; min_height=&#8221;328px&#8221; custom_margin=&#8221;10px|5px|0px|5px|false|true&#8221; custom_padding=&#8221;0px|10px|0px|10px|false|false&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<ul>\n<li>La condizione <em>legata al CLCN4<\/em> \u00e8 causata da varianti o &#8220;cambiamenti&#8221; nel gene <em>CLCN4<\/em>. Il gene <em>CLCN4<\/em> fornisce le istruzioni per produrre una proteina chiamata ClC-4. Si ritiene che questa proteina abbia un ruolo importante nella <strong>funzione delle cellule cerebrali e nervose.<\/strong>  <\/li>\n<li><strong>I cambiamenti nel gene <em>CLCN4<\/em> influenzano il funzionamento della proteina ClC-4<\/strong> all&#8217;interno delle cellule dell&#8217;organismo di un individuo affetto.<\/li>\n<li>La ricerca conferma che la <strong>ClC-4 lavora a stretto contatto con una &#8220;proteina partner&#8221; chiamata ClC-3<\/strong> e se una non funziona correttamente, l&#8217;altra pu\u00f2 cercare di compensare.<\/li>\n<li>Recentemente sono state scoperte anche <strong>nuove proteine partner<\/strong> (chiamate TMEM9A e TMEM9B). Queste possono contribuire a controllare il funzionamento di ClC-4 nel cervello e potrebbero essere nuovi bersagli per futuri trattamenti. <\/li>\n<\/ul>\n<p>[\/et_pb_text][\/et_pb_column][et_pb_column type=&#8221;1_2&#8243; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; custom_padding=&#8221;0px||0px||false|false&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_image src=&#8221;https:\/\/cureclcn4.org\/wp-content\/uploads\/2025\/06\/1.png&#8221; title_text=&#8221;DNA&#8221; align=&#8221;center&#8221; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; max_width=&#8221;75%&#8221; custom_margin=&#8221;0px||||false|false&#8221; global_colors_info=&#8221;{}&#8221;][\/et_pb_image][\/et_pb_column][\/et_pb_row][et_pb_row _builder_version=&#8221;4.27.4&#8243; background_color=&#8221;#ffffff&#8221; width=&#8221;100%&#8221; max_width=&#8221;1100px&#8221; min_height=&#8221;70px&#8221; height=&#8221;100px&#8221; custom_margin=&#8221;10px||5px||false|false&#8221; custom_padding=&#8221;0px||0px||false|false&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column type=&#8221;4_4&#8243; _builder_version=&#8221;4.27.4&#8243; custom_padding=&#8221;0px||0px||false|false&#8221; custom_padding_tablet=&#8221;0px||&#8221; custom_padding_phone=&#8221;&#8221; custom_padding_last_edited=&#8221;on|desktop&#8221; 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;][et_pb_text _builder_version=&#8221;4.27.4&#8243; text_font=&#8221;||||||||&#8221; text_font_size=&#8221;20px&#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; header_2_font=&#8221;|700|||||||&#8221; header_2_text_color=&#8221;#0e7162&#8243; header_2_font_size=&#8221;30px&#8221; text_orientation=&#8221;center&#8221; width=&#8221;92.2%&#8221; min_height=&#8221;87px&#8221; height=&#8221;100px&#8221; max_height=&#8221;1000px&#8221; custom_margin=&#8221;0px|19px|0px|19px|false|false&#8221; custom_padding=&#8221;0px||0px||false|false&#8221; 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;]<\/p>\n<h2 style=\"text-align: left;\">I modelli animali possono aiutarci a capire meglio le condizioni <em>legate alla CLCN4<\/em><\/h2>\n<p>[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=&#8221;1_2,1_2&#8243; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; background_color=&#8221;#FFFFFF&#8221; width=&#8221;100%&#8221; min_height=&#8221;346px&#8221; custom_margin=&#8221;0px||0px||false|false&#8221; custom_padding=&#8221;0px|0px|0px||false|false&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column type=&#8221;1_2&#8243; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; custom_padding=&#8221;0px||0px||false|false&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_text _builder_version=&#8221;4.27.4&#8243; text_font=&#8221;||||||||&#8221; text_font_size=&#8221;16px&#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; text_orientation=&#8221;justified&#8221; min_height=&#8221;343px&#8221; custom_margin=&#8221;5px|5px|0px|5px|false|true&#8221; custom_padding=&#8221;0px|10px|0px|10px|false|false&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<ul style=\"font-weight: 400;\">\n<li><span>I <strong>modelli di<em>topo Clcn4<\/em> <\/strong>recentemente sviluppati mostrano sintomi simili a quelli riscontrati in alcuni pazienti, come <strong>iperattivit\u00e0, difficolt\u00e0 di attenzione e problemi di coordinazione<\/strong>. I risultati iniziali indicano anche alcuni problemi di apprendimento e di memoria, ma \u00e8 necessario lavorare ancora per confermarli.   <\/span><\/li>\n<li><span>Gli scienziati stanno anche cercando di sviluppare un <strong>modello di zebrafish<em>CLCN4 <\/em><\/strong> per comprendere meglio le condizioni <em>legate a CLCN4<\/em>. I pesci zebra sono trasparenti, si sviluppano velocemente e sono pi\u00f9 economici da mantenere rispetto ai roditori, il che potrebbe aiutare i ricercatori a vagliare centinaia di farmaci per trovare quelli che possono essere utili. Questi animali stanno gi\u00e0 aiutando a trovare trattamenti per patologie simili, come le sindromi di Batten e Dravet.  <\/span><\/li>\n<\/ul>\n<p>[\/et_pb_text][\/et_pb_column][et_pb_column type=&#8221;1_2&#8243; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; custom_padding=&#8221;0px||0px||false|false&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_image src=&#8221;https:\/\/cureclcn4.org\/wp-content\/uploads\/2025\/06\/2.png&#8221; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; title_text=&#8221;Modello animale&#8221; max_width=&#8221;75%&#8221; align=&#8221;center&#8221; hover_enabled=&#8221;0&#8243; sticky_enabled=&#8221;0&#8243;][\/et_pb_image][\/et_pb_column][\/et_pb_row][et_pb_row _builder_version=&#8221;4.27.4&#8243; background_color=&#8221;#ffffff&#8221; width=&#8221;100%&#8221; max_width=&#8221;1100px&#8221; min_height=&#8221;38px&#8221; custom_margin=&#8221;10px|auto|10px|auto|false|false&#8221; custom_padding=&#8221;0px||0px||false|false&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column type=&#8221;4_4&#8243; _builder_version=&#8221;4.27.4&#8243; custom_padding=&#8221;0px||0px||false|false&#8221; custom_padding_tablet=&#8221;0px||&#8221; custom_padding_phone=&#8221;&#8221; custom_padding_last_edited=&#8221;on|desktop&#8221; 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;][et_pb_text _builder_version=&#8221;4.27.4&#8243; text_font=&#8221;||||||||&#8221; text_font_size=&#8221;20px&#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; header_2_font=&#8221;|700|||||||&#8221; header_2_text_color=&#8221;#0e7162&#8243; header_2_font_size=&#8221;30px&#8221; text_orientation=&#8221;center&#8221; width=&#8221;92.2%&#8221; min_height=&#8221;40px&#8221; custom_margin=&#8221;0px|10px|0px|10px|false|false&#8221; custom_padding=&#8221;0px||0px||false|false&#8221; 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;]<\/p>\n<h2 style=\"text-align: left;\">Studio delle varianti <em>CLCN4<\/em> <\/h2>\n<p>[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=&#8221;1_2,1_2&#8243; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; background_color=&#8221;#FFFFFF&#8221; width=&#8221;100%&#8221; min_height=&#8221;202px&#8221; custom_margin=&#8221;0px||0px||false|false&#8221; custom_padding=&#8221;0px||0px||false|false&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column type=&#8221;1_2&#8243; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; custom_padding=&#8221;0px||0px||false|false&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_text _builder_version=&#8221;4.27.4&#8243; text_font=&#8221;||||||||&#8221; text_font_size=&#8221;16px&#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; text_orientation=&#8221;justified&#8221; custom_margin=&#8221;0px|5px|0px|5px|false|true&#8221; custom_padding=&#8221;0px|10px|0px|10px|false|true&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<ul>\n<li>Non tutte le alterazioni genetiche (varianti) del gene <em>CLCN4<\/em> comportano una condizione <em>correlata al CLCN4<\/em>. Ci sono molti individui sani non affetti da varianti nel gene <em>CLCN4<\/em> la cui proteina ClC-4 funziona benissimo. <\/li>\n<li>Si sta lavorando per <strong>capire quali varianti hanno maggiori probabilit\u00e0 di causare i sintomi<\/strong> e come possono influenzare esattamente le funzioni cerebrali.<\/li>\n<li>Questo lavoro \u00e8 importante per aiutare a <strong>classificare le nuove varianti<\/strong>, <strong>supportare la diagnosi<\/strong> e <strong>guidare le<\/strong> decisioni <strong>terapeutiche<\/strong> in futuro.<\/li>\n<\/ul>\n<p>[\/et_pb_text][\/et_pb_column][et_pb_column type=&#8221;1_2&#8243; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; custom_padding=&#8221;0px||0px||false|false&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_image src=&#8221;https:\/\/cureclcn4.org\/wp-content\/uploads\/2025\/06\/3.png&#8221; title_text=&#8221;Ricercatore&#8221; align=&#8221;center&#8221; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; max_width=&#8221;75%&#8221; global_colors_info=&#8221;{}&#8221;][\/et_pb_image][\/et_pb_column][\/et_pb_row][et_pb_row _builder_version=&#8221;4.27.4&#8243; background_color=&#8221;#ffffff&#8221; width=&#8221;100%&#8221; max_width=&#8221;1100px&#8221; min_height=&#8221;31px&#8221; custom_margin=&#8221;10px||10px||false|false&#8221; custom_padding=&#8221;0px||0px||false|false&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column type=&#8221;4_4&#8243; _builder_version=&#8221;4.27.4&#8243; custom_padding=&#8221;0px||0px||false|false&#8221; custom_padding_tablet=&#8221;0px||&#8221; custom_padding_phone=&#8221;&#8221; custom_padding_last_edited=&#8221;on|desktop&#8221; 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;][et_pb_text _builder_version=&#8221;4.27.4&#8243; text_font=&#8221;||||||||&#8221; text_font_size=&#8221;20px&#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; header_2_font=&#8221;|700|||||||&#8221; header_2_text_color=&#8221;#0e7162&#8243; header_2_font_size=&#8221;30px&#8221; text_orientation=&#8221;center&#8221; width=&#8221;92.2%&#8221; min_height=&#8221;26px&#8221; custom_margin=&#8221;0px|19px|0px|19px|false|false&#8221; custom_padding=&#8221;0px||0px||false|false&#8221; 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;]<\/p>\n<h2 style=\"text-align: left;\">Il lato umano: pi\u00f9 di una diagnosi<\/h2>\n<p>[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=&#8221;1_2,1_2&#8243; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; background_color=&#8221;#FFFFFF&#8221; width=&#8221;100%&#8221; min_height=&#8221;259px&#8221; custom_margin=&#8221;10px|auto|10px|auto|false|false&#8221; custom_padding=&#8221;0px|0px|10px||false|false&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column type=&#8221;1_2&#8243; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; custom_padding=&#8221;0px||0px||false|false&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_text _builder_version=&#8221;4.27.4&#8243; text_font=&#8221;||||||||&#8221; text_font_size=&#8221;16px&#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; text_orientation=&#8221;justified&#8221; min_height=&#8221;239px&#8221; custom_margin=&#8221;10px|5px|0px|5px|false|true&#8221; custom_padding=&#8221;0px|10px|0px|10px|false|false&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<ul>\n<li>La condizione <em>CLCN4<\/em> non \u00e8 una sola condizione, ma un gruppo di esperienze correlate. Si tratta di una condizione del neurosviluppo con un&#8217;<strong>ampia gamma di sintomi<\/strong>, tra cui difficolt\u00e0 di apprendimento, difficolt\u00e0 di comunicazione, epilessia e differenze di movimento o comportamentali. <\/li>\n<li>La <strong>gravit\u00e0 e le caratteristiche specifiche possono variare in modo significativo<\/strong>, anche tra individui della stessa famiglia.<\/li>\n<li>Ci\u00f2 che accomuna tutti gli individui affetti da patologie <em>CLCN4<\/em> \u00e8 la <strong>straordinaria resilienza<\/strong>, l&#8217;<strong>empatia<\/strong> e la capacit\u00e0 di portare <strong>amore e connessione<\/strong> a chi li circonda.<\/li>\n<\/ul>\n<p>[\/et_pb_text][\/et_pb_column][et_pb_column type=&#8221;1_2&#8243; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; custom_padding=&#8221;0px||0px||false|false&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_image src=&#8221;https:\/\/cureclcn4.org\/wp-content\/uploads\/2025\/06\/4.png&#8221; title_text=&#8221;Bambino felice&#8221; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; max_width=&#8221;75%&#8221; custom_margin=&#8221;0px|0px|0px|0px|false|false&#8221; hover_enabled=&#8221;0&#8243; global_colors_info=&#8221;{}&#8221; align=&#8221;center&#8221; sticky_enabled=&#8221;0&#8243; module_alignment=&#8221;center&#8221;][\/et_pb_image][\/et_pb_column][\/et_pb_row][et_pb_row _builder_version=&#8221;4.27.4&#8243; background_color=&#8221;#ffffff&#8221; width=&#8221;100%&#8221; max_width=&#8221;1100px&#8221; min_height=&#8221;46px&#8221; custom_margin=&#8221;10px||10px||false|false&#8221; custom_padding=&#8221;0px||0px||false|false&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column type=&#8221;4_4&#8243; _builder_version=&#8221;4.27.4&#8243; custom_padding=&#8221;0px||0px||false|false&#8221; custom_padding_tablet=&#8221;0px||&#8221; custom_padding_phone=&#8221;&#8221; custom_padding_last_edited=&#8221;on|desktop&#8221; 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;][et_pb_text _builder_version=&#8221;4.27.4&#8243; text_font=&#8221;||||||||&#8221; text_font_size=&#8221;20px&#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; header_2_font=&#8221;|700|||||||&#8221; header_2_text_color=&#8221;#0e7162&#8243; header_2_font_size=&#8221;30px&#8221; text_orientation=&#8221;center&#8221; width=&#8221;92.2%&#8221; min_height=&#8221;26px&#8221; custom_margin=&#8221;0px|19px|0px|19px|false|false&#8221; custom_padding=&#8221;0px||0px||false|false&#8221; 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;]<\/p>\n<h2 style=\"text-align: left;\">Il potenziale delle terapie genetiche<\/h2>\n<p>[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=&#8221;1_2,1_2&#8243; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; background_color=&#8221;#FFFFFF&#8221; width=&#8221;100%&#8221; min_height=&#8221;282px&#8221; custom_margin=&#8221;0px|auto|0px|auto|false|false&#8221; custom_padding=&#8221;0px|0px|0px||false|false&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column type=&#8221;1_2&#8243; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; custom_padding=&#8221;0px||0px||false|false&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_text _builder_version=&#8221;4.27.4&#8243; text_font=&#8221;||||||||&#8221; text_font_size=&#8221;16px&#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; text_orientation=&#8221;justified&#8221; min_height=&#8221;224px&#8221; custom_margin=&#8221;0px|5px|0px|5px|false|true&#8221; custom_padding=&#8221;|10px||10px|false|false&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<ul>\n<li>Uno dei temi principali della conferenza \u00e8 stato il <strong>potenziale delle terapie genetiche<\/strong>, ovvero i trattamenti progettati per colpire errori specifici nei geni di una persona.<\/li>\n<li>Nuovi strumenti possono ora analizzare le singole alterazioni genetiche e identificare quali potrebbero rispondere a una terapia, come gli oligonucleotidi antisenso (ASO), che stanno gi\u00e0 aiutando le persone affette da altre patologie rare.<\/li>\n<li>Si sta anche lavorando utilizzando <strong>cellule staminali derivate da pazienti (iPSC)<\/strong> per creare cellule nervose in laboratorio e testare i trattamenti direttamente su di esse.<\/li>\n<li>Queste terapie sono ancora in fase iniziale per le condizioni <em>legate alla CLCN4<\/em>, ma la tecnologia si sta muovendo rapidamente e diversi team stanno lavorando per capire se e come queste terapie possano essere applicate alle condizioni <em>legate alla CLCN4<\/em>.<\/li>\n<\/ul>\n<p>[\/et_pb_text][\/et_pb_column][et_pb_column type=&#8221;1_2&#8243; 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global_colors_info=&#8221;{}&#8221;]<\/p>\n<h2 style=\"text-align: left;\">Migliore assistenza e supporto clinico<\/h2>\n<p>[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=&#8221;1_2,1_2&#8243; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; background_color=&#8221;#FFFFFF&#8221; width=&#8221;100%&#8221; min_height=&#8221;240px&#8221; custom_margin=&#8221;0px|auto|0px|auto|false|false&#8221; custom_padding=&#8221;|0px|5px||false|false&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column type=&#8221;1_2&#8243; _builder_version=&#8221;4.24.2&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_text _builder_version=&#8221;4.27.4&#8243; text_font=&#8221;||||||||&#8221; text_font_size=&#8221;16px&#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; text_orientation=&#8221;justified&#8221; min_height=&#8221;214px&#8221; custom_margin=&#8221;|5px|17px|5px|false|true&#8221; custom_padding=&#8221;|10px||10px|false|false&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<ul>\n<li>Gli interventi clinici hanno evidenziato come altre patologie rare abbiano beneficiato di <strong>cliniche specializzate<\/strong>, cure coordinate e reti sanitarie internazionali.<\/li>\n<li>Cure CLCN4 sta ora valutando cosa sarebbe necessario fare per istituire una <strong>clinica o un percorso di cura<em>specifico per CLCN4<\/em>. <\/strong> <\/li>\n<li>Un passo fondamentale in questo senso \u00e8 la <strong>creazione di collaborazioni<\/strong> tra medici, ricercatori e famiglie.<\/li>\n<li>Il nostro obiettivo \u00e8 fare in modo che le famiglie abbiano accesso a un&#8217;<strong>assistenza esperta<\/strong>, a informazioni e <strong>indicazioni<\/strong> e a un <strong>supporto coordinato<\/strong>, non solo ai risultati genetici.<\/li>\n<\/ul>\n<p>[\/et_pb_text][\/et_pb_column][et_pb_column type=&#8221;1_2&#8243; 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Gli argomenti trattati hanno riguardato le nuove conoscenze sulla biologia delle condizioni legate alla CLCN4, i progressi nei modelli animali della Clcn4, il potenziale delle terapie genetiche e i passi verso una migliore assistenza clinica. 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