{"id":3416,"date":"2023-01-09T15:51:40","date_gmt":"2023-01-09T15:51:40","guid":{"rendered":"https:\/\/cureclcn4.org\/ressourcen_familien\/"},"modified":"2025-11-11T12:35:42","modified_gmt":"2025-11-11T12:35:42","slug":"ressourcen_familien","status":"publish","type":"page","link":"https:\/\/cureclcn4.org\/de\/ressourcen_familien\/","title":{"rendered":"Ressourcen f\u00fcr Familien"},"content":{"rendered":"

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Ressourcen – f\u00fcr Familien<\/h1>\n

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Zus\u00e4tzlich zu den Informationen, die Sie im Abschnitt Familien<\/a> auf unserer Website finden, haben wir im Folgenden eine Sammlung n\u00fctzlicher Ressourcen zusammengestellt – von M\u00f6glichkeiten, sich mit anderen Familien auszutauschen, bei denen eine CLCN4-Erkrankung<\/em> diagnostiziert wurde, bis hin zu Informationspaketen und Merkbl\u00e4ttern, die Sie mit Ihrem Arzt oder Ihrem medizinischen Team teilen k\u00f6nnen.<\/p>\n

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Cure CLCN4 Willkommenspaket<\/h2>\n

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Unser brandneues Willkommenspaket<\/strong> ist jetzt zum Download verf\u00fcgbar! Diese umfassende Brosch\u00fcre enth\u00e4lt wichtige Ressourcen f\u00fcr Familien, die mit der CLCN4-Erkrankung<\/em> leben m\u00fcssen. Darin finden Sie aktuelle Informationen \u00fcber die CLCN4-Erkrankung<\/g> sowie familienfreundliche Erkl\u00e4rungen zur Biologie, Diagnose und den Symptomen von CLCN4<\/g>. Au\u00dferdem finden Sie Ratschl\u00e4ge zur Pflege, h\u00e4ufig gestellte Fragen, Ressourcen und M\u00f6glichkeiten, sich zu engagieren! <\/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

Klicken Sie auf die Schaltfl\u00e4chen unten, um Ihr kostenloses Exemplar zu erhalten<\/strong>. <\/p>\n

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Englisch<\/a> Spanisch<\/a> Italienisch<\/a> Deutsch<\/a><\/div>\n

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Weitere Informationen f\u00fcr Sie und Ihren Arzt<\/h2>\n

„]<\/p>\n

Weitere Informationen f\u00fcr Sie und Ihren Arzt<\/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=“CLCN4 Merkblatt“ _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

Dieses vom Center for Genetics Education (Australien) f\u00fcr Familien mit einer CLCN4-Diagnose<\/em> erstellte Informationsblatt<\/a> \u00fcber CLCN4<\/em> enth\u00e4lt alle wichtigen Informationen \u00fcber diese Erkrankung, einschlie\u00dflich Genetik, Symptome, Management, Ressourcen und vieles mehr!<\/p>\n

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Eine hervorragende Ressource, die Sie mit Ihrem Arzt und medizinischem Fachpersonal teilen k\u00f6nnen! Diese GeneReview-Publikation<\/a> enth\u00e4lt aktuelle Informationen \u00fcber die mit CLCN4 zusammenh\u00e4ngende<\/em> neurologische Entwicklungsst\u00f6rung, einschlie\u00dflich Diagnose, klinische Merkmale, Management und Ressourcen. <\/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=“Vergangene Familienkonferenzen“ _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

Unser erstes Online-Familientreffen fand im August 2021 statt und brachte Familien und Experten zusammen, um Wissen und Erfahrungen mit CLCN4-bezogenen Erkrankungen auszutauschen. Seitdem haben wir mehrere Online-Familientreffen abgehalten, um unsere globale CLCN4-Gemeinschaft weiter zu vernetzen und zu unterst\u00fctzen. Aufzeichnungen von fr\u00fcheren Treffen finden Sie hier<\/a>. <\/p>\n

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Gemeinschaft: Verbinden Sie sich mit anderen Familien<\/h2>\n

[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row custom_padding_last_edited=“on|phone“ _builder_version=“4.27.0″ 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_2,1_2″][et_pb_column type=“1_2″ _builder_version=“4.16″ custom_padding=“|||“ global_colors_info=“{}“ custom_padding__hover=“|||“][et_pb_heading title=“CLCN4-Familien Facebook-Gruppe“ _builder_version=“4.27.4″ _module_preset=“default“ hover_enabled=“0″ sticky_enabled=“0″ title_level=“h3″ title_text_align=“left“ title_text_color=“#0e7162″ title_font=“|700|||||||“ custom_margin=“||5px||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“ custom_margin=“|||0px|false|false“ hover_enabled=“0″ global_colors_info=“{}“ sticky_enabled=“0″ body_font_size=“15px“]<\/p>\n

Eine private Gruppe<\/a> f\u00fcr Familien, die mit der CLCN4-Krankheit<\/em> leben. Hier haben Sie die M\u00f6glichkeit, sich mit den anderen Mitgliedern der CLCN4-Gemeinschaft<\/em> auszutauschen, Fragen zu stellen und Erfahrungen zu teilen. <\/p>\n

[\/et_pb_blurb][et_pb_button button_url=“https:\/\/www.facebook.com\/groups\/272975780022928″ url_new_window=“on“ button_text=“Jetzt beitreten“ 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=“CureCLCN4 Facebook-Seite (f\u00fcr die breitere Gemeinschaft)“ 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

Dies ist die Facebook-Seite<\/a> unserer Organisation. Folgen Sie uns und bleiben Sie auf dem Laufenden mit Neuigkeiten \u00fcber die Wohlt\u00e4tigkeitsorganisation, unsere Forschungsprojekte, Spendenaktionen und Veranstaltungen. Nicht auf Facebook? Sie k\u00f6nnen uns auch auf Instagram<\/a> folgen!<\/p>\n

[\/et_pb_blurb][\/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\/2025\/11\/Community_2.png“ _builder_version=“4.27.4″ _module_preset=“default“ title_text=“Gemeinschaft_2″ max_width=“94%“ hover_enabled=“0″ sticky_enabled=“0″][\/et_pb_image][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=“1″ admin_label=“Video“ _builder_version=“4.16″ background_color=“#3a897e“ custom_padding=“0|1px|0|0px|false|false“ collapsed=“off“ global_colors_info=“{}“][et_pb_row _builder_version=“4.16″ _module_preset=“default“ global_colors_info=“{}“][et_pb_column type=“4_4″ _builder_version=“4.16″ _module_preset=“default“ global_colors_info=“{}“][et_pb_divider show_divider=“off“ _builder_version=“4.16″ _module_preset=“default“ global_colors_info=“{}“][\/et_pb_divider][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=“1″ fullwidth=“on“ _builder_version=“4.16″ background_color=“#f7f9f9″ global_colors_info=“{}“ use_background_color_gradient__hover=“off“ use_background_color_gradient__hover_enabled=“off“ background_color_gradient_start__hover=“#2b87da“ background_color_gradient_start__hover_enabled=“#2b87da“ background_color_gradient_end__hover=“#29c4a9″ background_color_gradient_end__hover_enabled=“#29c4a9″ background_color_gradient_type__hover=“linear“ background_color_gradient_type__hover_enabled=“linear“ background_color_gradient_direction__hover=“180deg“ background_color_gradient_direction__hover_enabled=“180deg“ background_color_gradient_direction_radial__hover=“center“ background_color_gradient_direction_radial__hover_enabled=“center“ background_color_gradient_start_position__hover=“0%“ background_color_gradient_start_position__hover_enabled=“0%“ background_color_gradient_end_position__hover=“100%“ background_color_gradient_end_position__hover_enabled=“100%“ background_color_gradient_overlays_image__hover=“off“ background_color_gradient_overlays_image__hover_enabled=“off“ parallax__hover=“off“ parallax__hover_enabled=“off“ parallax_method__hover=“on“ parallax_method__hover_enabled=“on“ background_size__hover=“cover“ background_size__hover_enabled=“cover“ background_position__hover=“center“ background_position__hover_enabled=“center“ background_repeat__hover=“no-repeat“ background_repeat__hover_enabled=“no-repeat“ background_blend__hover=“normal“ background_blend__hover_enabled=“normal“ allow_player_pause__hover=“off“ allow_player_pause__hover_enabled=“off“ background_video_pause_outside_viewport__hover=“on“ background_video_pause_outside_viewport__hover_enabled=“on“ background_color_gradient_stops__hover=“#2b87da 0%|#29c4a9 100%“][et_pb_fullwidth_image src=“https:\/\/cureclcn4.org\/wp-content\/uploads\/2020\/08\/charity-23.png“ _builder_version=“4.16″ animation_style=“slide“ animation_direction=“bottom“ animation_intensity_slide=“4%“ global_colors_info=“{}“][\/et_pb_fullwidth_image][\/et_pb_section]<\/p>\n","protected":false},"excerpt":{"rendered":"

Zus\u00e4tzlich zu den Informationen, die Sie im Abschnitt Familien auf unserer Website finden, haben wir im Folgenden eine Liste weiterer n\u00fctzlicher Ressourcen zusammengestellt. Sie reicht von Informationen \u00fcber M\u00f6glichkeiten, sich mit anderen Familien, die von CLCN4 betroffen sind, auszutauschen, bis hin zu Informationsbl\u00e4ttern \u00fcber CLCN4, die Sie Ihrem Arzt und medizinischem Fachpersonal zur Verf\u00fcgung stellen k\u00f6nnen.<\/p>\n","protected":false},"author":2,"featured_media":7019,"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-3416","page","type-page","status-publish","has-post-thumbnail","hentry"],"_links":{"self":[{"href":"https:\/\/cureclcn4.org\/de\/wp-json\/wp\/v2\/pages\/3416","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/cureclcn4.org\/de\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/cureclcn4.org\/de\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/cureclcn4.org\/de\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/cureclcn4.org\/de\/wp-json\/wp\/v2\/comments?post=3416"}],"version-history":[{"count":10,"href":"https:\/\/cureclcn4.org\/de\/wp-json\/wp\/v2\/pages\/3416\/revisions"}],"predecessor-version":[{"id":7063,"href":"https:\/\/cureclcn4.org\/de\/wp-json\/wp\/v2\/pages\/3416\/revisions\/7063"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/cureclcn4.org\/de\/wp-json\/wp\/v2\/media\/7019"}],"wp:attachment":[{"href":"https:\/\/cureclcn4.org\/de\/wp-json\/wp\/v2\/media?parent=3416"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}