{"id":3574,"date":"2023-01-11T13:31:18","date_gmt":"2023-01-11T13:31:18","guid":{"rendered":"https:\/\/cureclcn4.org\/risorse_famiglie\/"},"modified":"2025-11-11T12:35:43","modified_gmt":"2025-11-11T12:35:43","slug":"risorse_famiglie","status":"publish","type":"page","link":"https:\/\/cureclcn4.org\/it\/risorse_famiglie\/","title":{"rendered":"Risorse per le famiglie"},"content":{"rendered":"

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Risorse – per le famiglie<\/h1>\n

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Oltre alle informazioni fornite nella sezione Famiglie<\/a> del nostro sito web, abbiamo raccolto una serie di risorse utili qui di seguito: dalle opportunit\u00e0 di entrare in contatto con altre famiglie con diagnosi di patologie correlate al gene CLCN4 ai pacchetti informativi e alle schede informative che potete condividere con il vostro medico o team sanitario.<\/p>\n

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sticky_enabled=”0″]<\/p>\n

Pacchetto di benvenuto Cure CLCN4<\/h2>\n

[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=”1_2,1_2″ custom_padding_last_edited=”on|phone” _builder_version=”4.27.4″ background_color=”#ffffff” max_width=”1200px” custom_padding=”29px|80px|28px|80px|false|false” custom_padding_tablet=”|80px||80px|false|true” custom_padding_phone=”40px|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=”{}”][et_pb_column type=”1_2″ _builder_version=”4.16″ custom_padding=”|||” global_colors_info=”{}” custom_padding__hover=”|||”][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=”{}” body_font_size=”15px” sticky_enabled=”0″]<\/p>\n

Il nostro nuovissimo Welcome Pack \u00e8 ora disponibile per il download! Questo opuscolo completo \u00e8 ricco di risorse essenziali per le famiglie che affrontano la vita con una condizione correlata al CLCN4. Al suo interno troverete informazioni aggiornate sulla condizione correlata al CLCN4, nonch\u00e9 spiegazioni adatte alle famiglie sulla biologia, la diagnosi e i sintomi del CLCN4. Troverete anche consigli sulla cura, domande frequenti, risorse e modi per partecipare! <\/p>\n

[\/et_pb_blurb][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” global_colors_info=”{}”]<\/p>\n

Clicca sui pulsanti qui sotto per ottenere la tua copia gratuita. <\/p>\n

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English<\/a> Spanish<\/a> Italian<\/a> German<\/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=”Pacchetto di benvenuto 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

Ulteriori informazioni per voi e il vostro medico<\/h2>\n

“]<\/p>\n

Ulteriori informazioni per voi e il vostro medico<\/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=”Scheda informativa sul 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

Questa scheda informativa<\/a> sulla malattia correlata al gene CLCN4, fornita dal Center for Genetics Education (Australia) alle famiglie con diagnosi di CLCN4, contiene tutte le informazioni fondamentali su questa malattia, tra cui aspetti genetici, sintomi, gestione, risorse e molto altro ancora!<\/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=”Gene Reviews” _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

Una risorsa eccellente da condividere con il proprio medico e gli operatori sanitari! Questa pubblicazione GeneReview<\/a> contiene informazioni aggiornate sui disturbi dello sviluppo neurologico correlati al gene CLCN4, tra cui diagnosi, caratteristiche cliniche, gestione e risorse. <\/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=”Conferenze familiari passate” _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

Il nostro primo incontro online per le famiglie si \u00e8 tenuto nell’agosto 2021, riunendo famiglie ed esperti per condividere conoscenze ed esperienze vissute relative alle patologie correlate al CLCN4. Da allora, abbiamo organizzato diversi incontri online per le famiglie, continuando a mettere in contatto e sostenere la nostra comunit\u00e0 globale CLCN4. Le registrazioni degli incontri precedenti sono disponibili qui<\/a>. <\/p>\n

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Comunit\u00e0: entra in contatto con altre famiglie<\/h2>\n

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Un gruppo privato<\/a> per famiglie che convivono con una patologia correlata al gene CLCN4. Iscriviti per avere l’opportunit\u00e0 di entrare in contatto con il resto della comunit\u00e0 CLCN4, porre domande e condividere esperienze. <\/p>\n

[\/et_pb_blurb][et_pb_button button_url=”https:\/\/www.facebook.com\/groups\/272975780022928″ url_new_window=”on” button_text=”Iscriviti ora” 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=”Pagina Facebook CureCLCN4 (per una comunit\u00e0 pi\u00f9 ampia)” 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

Questa \u00e8 la pagina Facebook<\/a> della nostra organizzazione. Seguici per rimanere aggiornato sulle novit\u00e0 relative alla nostra organizzazione benefica, ai nostri progetti di ricerca, alle iniziative di raccolta fondi e agli eventi. Non siete su Facebook? Puoi anche seguirci su Instagram!<\/a><\/p>\n

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Oltre alle informazioni fornite nella sezione Famiglie del nostro sito web, abbiamo compilato un elenco di altre risorse utili riportate di seguito, che vanno dai dettagli sulle opportunit\u00e0 di entrare in contatto con altre famiglie colpite da patologie correlate al CLCN4 alle schede informative sulle patologie correlate al CLCN4 che potete condividere con il vostro medico e con gli operatori sanitari.<\/p>\n","protected":false},"author":2,"featured_media":7020,"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-3574","page","type-page","status-publish","has-post-thumbnail","hentry"],"_links":{"self":[{"href":"https:\/\/cureclcn4.org\/it\/wp-json\/wp\/v2\/pages\/3574","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/cureclcn4.org\/it\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/cureclcn4.org\/it\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/cureclcn4.org\/it\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/cureclcn4.org\/it\/wp-json\/wp\/v2\/comments?post=3574"}],"version-history":[{"count":10,"href":"https:\/\/cureclcn4.org\/it\/wp-json\/wp\/v2\/pages\/3574\/revisions"}],"predecessor-version":[{"id":7066,"href":"https:\/\/cureclcn4.org\/it\/wp-json\/wp\/v2\/pages\/3574\/revisions\/7066"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/cureclcn4.org\/it\/wp-json\/wp\/v2\/media\/7020"}],"wp:attachment":[{"href":"https:\/\/cureclcn4.org\/it\/wp-json\/wp\/v2\/media?parent=3574"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}