{"id":983,"date":"2024-06-24T13:27:43","date_gmt":"2024-06-24T11:27:43","guid":{"rendered":"https:\/\/cfnorge.bwod.dev\/?page_id=983"},"modified":"2026-03-20T15:42:02","modified_gmt":"2026-03-20T14:42:02","slug":"barn-med-cystisk-fibrose","status":"publish","type":"page","link":"https:\/\/www.cfnorge.no\/en\/barn-med-cystisk-fibrose\/","title":{"rendered":"Children with cystic fibrosis"},"content":{"rendered":"<p>[et_pb_section fb_built=&raquo;1&#8243; next_background_color=&raquo;#FFFFFF&raquo; _builder_version=&raquo;4.21.0&#8243; _module_preset=&raquo;default&raquo; background_color=&raquo;gcid-9e2f3af2-1007-4221-b250-8e35d98c5991&#8243; background_enable_image=&raquo;off&raquo; background_size=&raquo;custom&raquo; background_image_width=&raquo;101%&raquo; custom_padding=&raquo;||117px|||&raquo; bottom_divider_style=&raquo;wave&raquo; locked=&raquo;off&raquo; global_colors_info=&raquo;{%22gcid-9e2f3af2-1007-4221-b250-8e35d98c5991%22:%91%22background_color%22%93}&raquo;][et_pb_row _builder_version=&raquo;4.21.0&#8243; _module_preset=&raquo;default&raquo; custom_padding=&raquo;11px||4px|||&raquo; global_colors_info=&raquo;{}&raquo;][et_pb_column type=&raquo;4_4&#8243; _builder_version=&raquo;4.21.0&#8243; _module_preset=&raquo;default&raquo; global_colors_info=&raquo;{}&raquo;][et_pb_text _builder_version=&raquo;4.21.0&#8243; _module_preset=&raquo;default&raquo; header_font=&raquo;Poppins|600|||||||&raquo; header_text_color=&raquo;gcid-26e97d0d-b127-4ce1-b597-0df3fb01df24&#8243; custom_margin=&raquo;0px||0px||false|false&raquo; custom_padding=&raquo;0px||0px||false|false&raquo; global_colors_info=&raquo;{%22gcid-26e97d0d-b127-4ce1-b597-0df3fb01df24%22:%91%22header_text_color%22%93}&raquo;]<\/p>\n<h1>Barn med cystisk fibrose<\/h1>\n<p>[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=&raquo;1_2,1_2&#8243; _builder_version=&raquo;4.21.0&#8243; _module_preset=&raquo;default&raquo; custom_padding=&raquo;11px||4px|||&raquo; global_colors_info=&raquo;{}&raquo;][et_pb_column type=&raquo;1_2&#8243; _builder_version=&raquo;4.21.0&#8243; _module_preset=&raquo;default&raquo; global_colors_info=&raquo;{}&raquo;][et_pb_text _builder_version=&raquo;4.21.0&#8243; _module_preset=&raquo;default&raquo; text_font=&raquo;Poppins|300|||||||&raquo; text_text_color=&raquo;gcid-26e97d0d-b127-4ce1-b597-0df3fb01df24&#8243; text_font_size=&raquo;16px&raquo; text_line_height=&raquo;1.8em&raquo; global_colors_info=&raquo;{%22gcid-26e97d0d-b127-4ce1-b597-0df3fb01df24%22:%91%22text_text_color%22%93}&raquo;]<\/p>\n<p>Ingen barn er like, og dette gjelder naturligvis ogs\u00e5 barn med cystisk fibrose (CF), b\u00e5de i personlighet og sykdomsbilde. Alle barn vil oppdage, utforske og utvikle seg, men n\u00e5r et barn har CF, er det noen hensyn som m\u00e5 tas.<\/p>\n<p>Dette krever individuell behandling tilpasset hvert barn og dets sykdom og behov. Sykdomsbildet vil ogs\u00e5 forandre seg etter hvert som barnet vokser, og sykdommen vil kreve mer av alle involverte, spesielt barnet selv. Det er derfor viktig \u00e5 v\u00e6re forberedt p\u00e5 at utfordringene vil endre seg etter hvert som barnet vokser. Ved \u00e5 tilpasse omsorgen og behandlingen til barnets utvikling, kan man bedre st\u00f8tte barnet gjennom disse utfordringene. Under vil du finne gode r\u00e5d til nettopp dette. For mer informasjon, kan dere ogs\u00e5 lese om sm\u00e5barnsalder med cystisk fibrose p\u00e5 <a href=\"https:\/\/www.oslo-universitetssykehus.no\/fag-og-forskning\/nasjonale-og-regionale-tjenester\/Sjeldensenteret-lungesykdommer\/smabarnsalder\/?fbclid=IwY2xjawQqKlBleHRuA2FlbQIxMABicmlkETBYT1o5WkFvMzJHT1J6OHlhc3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHh9hRj7DEMJU_JzBSkgjf1i68WQiyh0obHgFGwmJM7kem4i7EAEhQDMo4Wcf_aem_jaZdQ8wP5ngKWP5izt0d0Q#mat-til-spedbarn-og-smabarn\">OUS sine nettsider.<\/a>\u00a0<\/p>\n<p>[\/et_pb_text][\/et_pb_column][et_pb_column type=&raquo;1_2&#8243; _builder_version=&raquo;4.21.0&#8243; _module_preset=&raquo;default&raquo; global_colors_info=&raquo;{}&raquo;][et_pb_image src=&raquo;https:\/\/cfnorge.bwod.dev\/wp-content\/uploads\/2023\/09\/johnny-cohen-OxOxqLAWvE0-unsplash-scaled.jpg&raquo; title_text=&raquo;johnny-cohen-OxOxqLAWvE0-unsplash&raquo; _builder_version=&raquo;4.21.0&#8243; _module_preset=&raquo;default&raquo; global_colors_info=&raquo;{}&raquo;][\/et_pb_image][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=&raquo;1&#8243; _builder_version=&raquo;4.21.0&#8243; _module_preset=&raquo;default&raquo; background_color=&raquo;#FFFFFF&raquo; custom_padding=&raquo;24px|||||&raquo; global_colors_info=&raquo;{}&raquo;][et_pb_row _builder_version=&raquo;4.21.0&#8243; _module_preset=&raquo;default&raquo; global_colors_info=&raquo;{}&raquo;][et_pb_column type=&raquo;4_4&#8243; _builder_version=&raquo;4.21.0&#8243; _module_preset=&raquo;default&raquo; global_colors_info=&raquo;{}&raquo;][et_pb_text quote_border_color=&raquo;gcid-edcc47c2-e936-4ba2-8e6c-8ca8cb2c2a05&#8243; _builder_version=&raquo;4.21.0&#8243; _module_preset=&raquo;default&raquo; text_font=&raquo;Poppins|300|||||||&raquo; text_text_color=&raquo;gcid-26e97d0d-b127-4ce1-b597-0df3fb01df24&#8243; text_font_size=&raquo;16px&raquo; text_line_height=&raquo;1.8em&raquo; link_font=&raquo;Poppins|500|||||||&raquo; link_text_color=&raquo;gcid-edcc47c2-e936-4ba2-8e6c-8ca8cb2c2a05&#8243; header_2_font_size=&raquo;22px&raquo; custom_padding=&raquo;||0px|||&raquo; global_colors_info=&raquo;{%22gcid-26e97d0d-b127-4ce1-b597-0df3fb01df24%22:%91%22text_text_color%22%93,%22gcid-edcc47c2-e936-4ba2-8e6c-8ca8cb2c2a05%22:%91%22quote_border_color%22,%22link_text_color%22%93}&raquo;]<\/p>\n<h2 aria-level=\"2\"><strong><span style=\"color: #050267;\">Et barneliv med cystisk fibrose <\/span><\/strong><\/h2>\n<p>I videoen under kan du se perspektivet til danske Asta p\u00e5 6 \u00e5r \u00e5r hun forteller om sin hverdag med sykdommen.<\/p>\n<p>[\/et_pb_text][et_pb_video src=&raquo;https:\/\/www.youtube.com\/watch?v=AmFlt8PxNIE&#038;t=9s&raquo; src_webm=&raquo;https:\/\/www.youtube.com\/watch?v=AmFlt8PxNIE&#038;t=9s&raquo; _builder_version=&raquo;4.21.0&#8243; _module_preset=&raquo;default&raquo; global_colors_info=&raquo;{}&raquo;][\/et_pb_video][et_pb_text quote_border_color=&raquo;gcid-edcc47c2-e936-4ba2-8e6c-8ca8cb2c2a05&#8243; _builder_version=&raquo;4.21.0&#8243; _module_preset=&raquo;default&raquo; text_font=&raquo;Poppins|300|||||||&raquo; text_text_color=&raquo;gcid-26e97d0d-b127-4ce1-b597-0df3fb01df24&#8243; text_font_size=&raquo;16px&raquo; text_line_height=&raquo;1.8em&raquo; link_font=&raquo;Poppins|500|||||||&raquo; link_text_color=&raquo;gcid-edcc47c2-e936-4ba2-8e6c-8ca8cb2c2a05&#8243; header_2_font_size=&raquo;22px&raquo; custom_padding=&raquo;||0px|||&raquo; global_colors_info=&raquo;{%22gcid-26e97d0d-b127-4ce1-b597-0df3fb01df24%22:%91%22text_text_color%22%93,%22gcid-edcc47c2-e936-4ba2-8e6c-8ca8cb2c2a05%22:%91%22quote_border_color%22,%22link_text_color%22%93}&raquo;]<\/p>\n<h2 aria-level=\"2\"><strong><span style=\"color: #050267;\">De f\u00f8rste \u00e5rene med CF<\/span><\/strong><\/h2>\n<p>Her finner du nyttig informasjon om ulike temaer relatert til cystisk fibrose (CF). Vi dekker viktige aspekter som barnehage\u00e5rene, skolestart, individuell plan (IP) og ansvarsgruppe. Disse temaene er avgj\u00f8rende for barn og familier som lever med CF, og tilretteleggingen som kreves for \u00e5 sikre en best mulig hverdag.<\/p>\n<p>[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=&raquo;1_2,1_2&#8243; use_custom_gutter=&raquo;on&raquo; gutter_width=&raquo;2&#8243; _builder_version=&raquo;4.21.0&#8243; _module_preset=&raquo;default&raquo; locked=&raquo;off&raquo; global_colors_info=&raquo;{}&raquo;][et_pb_column type=&raquo;1_2&#8243; _builder_version=&raquo;4.21.0&#8243; _module_preset=&raquo;default&raquo; global_colors_info=&raquo;{}&raquo;][et_pb_toggle title=&raquo;Barnehage med cystisk fibrose&raquo; open_toggle_text_color=&raquo;gcid-edcc47c2-e936-4ba2-8e6c-8ca8cb2c2a05&#8243; open_toggle_background_color=&raquo;gcid-9e2f3af2-1007-4221-b250-8e35d98c5991&#8243; closed_toggle_background_color=&raquo;gcid-9e2f3af2-1007-4221-b250-8e35d98c5991&#8243; icon_color=&raquo;gcid-edcc47c2-e936-4ba2-8e6c-8ca8cb2c2a05&#8243; toggle_icon=&raquo;&#x22;||divi||400&#8243; use_icon_font_size=&raquo;on&raquo; icon_font_size=&raquo;18px&raquo; open_icon_color=&raquo;gcid-edcc47c2-e936-4ba2-8e6c-8ca8cb2c2a05&#8243; open_toggle_icon=&raquo;&#x21;||divi||400&#8243; _builder_version=&raquo;4.21.0&#8243; _module_preset=&raquo;default&raquo; title_text_color=&raquo;gcid-edcc47c2-e936-4ba2-8e6c-8ca8cb2c2a05&#8243; title_font=&raquo;|600|||||||&raquo; title_line_height=&raquo;1.4em&raquo; body_text_color=&raquo;gcid-26e97d0d-b127-4ce1-b597-0df3fb01df24&#8243; body_link_text_color=&raquo;gcid-edcc47c2-e936-4ba2-8e6c-8ca8cb2c2a05&#8243; custom_padding=&raquo;35px||35px||false|false&raquo; border_width_all=&raquo;0px&raquo; locked=&raquo;off&raquo; global_colors_info=&raquo;{%22gcid-edcc47c2-e936-4ba2-8e6c-8ca8cb2c2a05%22:%91%22icon_color%22,%22open_toggle_text_color%22,%22title_text_color%22,%22body_link_text_color%22,%22open_icon_color%22%93,%22gcid-26e97d0d-b127-4ce1-b597-0df3fb01df24%22:%91%22body_text_color%22%93,%22gcid-9e2f3af2-1007-4221-b250-8e35d98c5991%22:%91%22closed_toggle_background_color%22,%22open_toggle_background_color%22%93}&raquo;]<\/p>\n<p>Cystisk fibrose-kompetent helsepersonell anbefaler \u00e5 utsette barnehagestarten til barnet har fylt to \u00e5r. Utsettelsen gir tid for etablering av individuell behandling, ogs\u00e5 familien tid til \u00e5 tilpasse seg hverdagen med en sykdom som krever planlegging og tilrettelegging.<\/p>\n<p>Oppstart i barnehage b\u00f8r planlegges grundig i samr\u00e5d med foreldre, barnehagepersonell og relevant helsepersonell. Det anbefales \u00e5 begynne planleggingen tidlig, gjerne ett \u00e5r i forveien. Cystisk fibrose er en sjelden sykdom, og barnehagepersonalet trenger spesifikk oppl\u00e6ring om sykdommen og hvordan den p\u00e5virker barnet. Fokus b\u00f8r v\u00e6re p\u00e5 barnets individuelle behov for smittevern, renhold og behandling i barnehagehverdagen, samtidig som barnet motiveres til \u00e5 utvikle ferdigheter og forst\u00e5else for egen sykdom og behandling.<\/p>\n<p>Foreldre med erfaring innen CF, i samarbeid med helsepersonell, bidrar med informasjon og oppl\u00e6ring til barnehagepersonalet og andre ansatte i kommunen som skal f\u00f8lge barnet. Tilstrekkelig renhold av omr\u00e5der, leker og lignende er sv\u00e6rt viktig og krever ekstra ressurser. Barnets behov for tilrettelegging f\u00f8rer ofte til s\u00f8knader fra barnehagen om ekstra ressurser, for eksempel for medisinering til m\u00e5ltider, antibiotikabehandling og oppl\u00e6ring i hygiene-rutiner. Andre behov kan v\u00e6re transport til\/fra fysioterapeut for spesifikk lungebehandling i barnehagetiden.<\/p>\n<p>N\u00e5r det gjelder \u00e5 informere andre foreldre om barnets sykdom, velger de fleste \u00e5 dele informasjonen positivt. Noen foretrekker \u00e5 informere selv, mens andre tar med personalet eller helsepersonell i prosessen. Skriftlig materiell kan ogs\u00e5 v\u00e6re til hjelp.<\/p>\n<p>Nettkurset &laquo;Cystisk fibrose i barnehagen&raquo; er tilgjengelig p\u00e5 <a rel=\"noreferrer noopener\" target=\"_new\" href=\"https:\/\/www.sjelden.no\">www.sjelden.no<\/a> og anbefales som grunnleggende oppl\u00e6ring for barnehagepersonell.<\/p>\n<p>[\/et_pb_toggle][\/et_pb_column][et_pb_column type=&raquo;1_2&#8243; _builder_version=&raquo;4.21.0&#8243; _module_preset=&raquo;default&raquo; global_colors_info=&raquo;{}&raquo;][et_pb_toggle title=&raquo;Skolestart med cystisk fibrose&raquo; open_toggle_text_color=&raquo;gcid-edcc47c2-e936-4ba2-8e6c-8ca8cb2c2a05&#8243; open_toggle_background_color=&raquo;gcid-9e2f3af2-1007-4221-b250-8e35d98c5991&#8243; closed_toggle_background_color=&raquo;gcid-9e2f3af2-1007-4221-b250-8e35d98c5991&#8243; icon_color=&raquo;gcid-edcc47c2-e936-4ba2-8e6c-8ca8cb2c2a05&#8243; toggle_icon=&raquo;&#x22;||divi||400&#8243; use_icon_font_size=&raquo;on&raquo; icon_font_size=&raquo;18px&raquo; open_icon_color=&raquo;gcid-edcc47c2-e936-4ba2-8e6c-8ca8cb2c2a05&#8243; open_toggle_icon=&raquo;&#x21;||divi||400&#8243; _builder_version=&raquo;4.21.0&#8243; _module_preset=&raquo;default&raquo; title_text_color=&raquo;gcid-edcc47c2-e936-4ba2-8e6c-8ca8cb2c2a05&#8243; title_font=&raquo;|600|||||||&raquo; title_line_height=&raquo;1.4em&raquo; body_text_color=&raquo;gcid-26e97d0d-b127-4ce1-b597-0df3fb01df24&#8243; body_link_text_color=&raquo;gcid-edcc47c2-e936-4ba2-8e6c-8ca8cb2c2a05&#8243; custom_padding=&raquo;35px||35px||false|false&raquo; border_width_all=&raquo;0px&raquo; locked=&raquo;off&raquo; global_colors_info=&raquo;{%22gcid-edcc47c2-e936-4ba2-8e6c-8ca8cb2c2a05%22:%91%22icon_color%22,%22open_toggle_text_color%22,%22title_text_color%22,%22body_link_text_color%22,%22open_icon_color%22%93,%22gcid-26e97d0d-b127-4ce1-b597-0df3fb01df24%22:%91%22body_text_color%22%93,%22gcid-9e2f3af2-1007-4221-b250-8e35d98c5991%22:%91%22open_toggle_background_color%22,%22closed_toggle_background_color%22%93}&raquo;]<\/p>\n<p>Overgangen fra barnehage til skole krever grundig planlegging og b\u00f8r v\u00e6re p\u00e5begynt h\u00f8sten f\u00f8r skolestart. Erfaringer fra barnehagen med tilrettelegging er verdifull informasjon for skolen n\u00e5r de skal ta imot en elev med CF. Behov for ekstra ressurser vurderes av skolen i samr\u00e5d med foreldre og behandlere, og det kreves s\u00f8knad om tildeling av ressurser.<\/p>\n<p>Skolehverdagen er mer strukturert med en fast timeplan, og derfor kan tilrettelegging v\u00e6re avgj\u00f8rende for \u00e5 sikre en god hverdag. Mange velger \u00e5 legge lungebehandling med fysioterapeut til skolefritidsordningen for \u00e5 unng\u00e5 tap av undervisningstid.<\/p>\n<p>Planleggingen mot skolestart inneholder mange av de samme elementene som for barnehagestart; informasjon om cystisk fibrose, behov for renhold, hygiene, tilrettelegging av toaletter, treningsfasiliteter, dusj og garderobe.<\/p>\n<p>Mange barn som trenger tilrettelegging i skolehverdagen f\u00e5r opprettet en Individuell Oppl\u00e6ringsplan (IOP). IOP-en er utformet for \u00e5 sikre tilpasset oppl\u00e6ring ved behov.<\/p>\n<p>I skolealder vil klassekameratene v\u00e6re nysgjerrige og \u00f8nske \u00e5 l\u00e6re mer. Boken &laquo;S\u00e5nn er det&raquo; av Widar Aspeli gir en god innf\u00f8ring i hvordan livet med CF kan v\u00e6re, og hva sykdommen inneb\u00e6rer. Kontakt Norsk senter for cystisk fibrose for \u00e5 bestille boken.<\/p>\n<p>Noen barn velger \u00e5 informere klassekameratene selv om sykdommen, mens andre foretrekker at foreldre, l\u00e6rere eller helsepersonell tar seg av informasjonen. Noen velger \u00e5 svare p\u00e5 sp\u00f8rsm\u00e5lene som oppst\u00e5r etter hvert. Det finnes ingen fasit her \u2013 hver familie og person med CF m\u00e5 selv avgj\u00f8re hva som passer best.<\/p>\n<p>Nettkurset &laquo;Cystisk fibrose p\u00e5 skolen&raquo; er tilgjengelig p\u00e5 <a rel=\"noreferrer noopener\" target=\"_new\" href=\"https:\/\/www.sjelden.no\">www.sjelden.no<\/a> og anbefales som grunnleggende oppl\u00e6ring for personell b\u00e5de i barneskolen og skolefritidsordningen (SFO).<\/p>\n<p>[\/et_pb_toggle][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=&raquo;1_2,1_2&#8243; _builder_version=&raquo;4.21.0&#8243; _module_preset=&raquo;default&raquo; box_shadow_style=&raquo;preset3&#8243; global_colors_info=&raquo;{}&raquo;][et_pb_column type=&raquo;1_2&#8243; _builder_version=&raquo;4.21.0&#8243; _module_preset=&raquo;default&raquo; global_colors_info=&raquo;{}&raquo;][et_pb_image src=&raquo;https:\/\/www.cfnorge.no\/wp-content\/uploads\/2025\/06\/cf-barnehage-.jpg&raquo; title_text=&raquo;cf barnehage&raquo; _builder_version=&raquo;4.21.0&#8243; _module_preset=&raquo;default&raquo; global_colors_info=&raquo;{}&raquo;][\/et_pb_image][\/et_pb_column][et_pb_column type=&raquo;1_2&#8243; _builder_version=&raquo;4.21.0&#8243; _module_preset=&raquo;default&raquo; global_colors_info=&raquo;{}&raquo;][et_pb_image src=&raquo;https:\/\/www.cfnorge.no\/wp-content\/uploads\/2025\/06\/Cystisk-fibrose-pa-skolen-.jpg&raquo; title_text=&raquo;Cystisk fibrose p\u00e5 skolen&raquo; _builder_version=&raquo;4.21.0&#8243; _module_preset=&raquo;default&raquo; global_colors_info=&raquo;{}&raquo;][\/et_pb_image][\/et_pb_column][\/et_pb_row][et_pb_row _builder_version=&raquo;4.21.0&#8243; _module_preset=&raquo;default&raquo; global_colors_info=&raquo;{}&raquo;][et_pb_column type=&raquo;4_4&#8243; _builder_version=&raquo;4.21.0&#8243; _module_preset=&raquo;default&raquo; global_colors_info=&raquo;{}&raquo;][et_pb_text quote_border_color=&raquo;gcid-edcc47c2-e936-4ba2-8e6c-8ca8cb2c2a05&#8243; _builder_version=&raquo;4.21.0&#8243; _module_preset=&raquo;default&raquo; text_font=&raquo;Poppins|300|||||||&raquo; text_text_color=&raquo;gcid-26e97d0d-b127-4ce1-b597-0df3fb01df24&#8243; text_font_size=&raquo;16px&raquo; text_line_height=&raquo;1.8em&raquo; link_font=&raquo;Poppins|500|||||||&raquo; link_text_color=&raquo;gcid-edcc47c2-e936-4ba2-8e6c-8ca8cb2c2a05&#8243; header_2_font_size=&raquo;22px&raquo; global_colors_info=&raquo;{%22gcid-26e97d0d-b127-4ce1-b597-0df3fb01df24%22:%91%22text_text_color%22%93,%22gcid-edcc47c2-e936-4ba2-8e6c-8ca8cb2c2a05%22:%91%22quote_border_color%22,%22link_text_color%22%93}&raquo;]<\/p>\n<h2 aria-level=\"2\"><strong><span style=\"color: #050267;\">Individuell plan (IP)\u00a0<\/span><\/strong><\/h2>\n<p><span data-contrast=\"none\">D<\/span>et er mye nytt \u00e5 l\u00e6re i forbindelse med cystisk fibrose , og mange kan f\u00f8le frustrasjon og usikkerhet om hvilke rettigheter de har og hva hjelpeapparatet kan bist\u00e5 med. De fleste som lever med CF vil ha behov for samvirke mellom flere instanser over lang tid. Derfor kan det v\u00e6re sv\u00e6rt nyttig \u00e5 utarbeide en individuell plan (IP) i samarbeid med kommunen. IP er ikke p\u00e5lagt, men man har rett til \u00e5 f\u00e5 utarbeidet en IP hvis man \u00f8nsker det.<\/p>\n<p>Planen har har som m\u00e5l \u00e5 beskrive alle behov barnet og familien har, samt \u00e5 tydeliggj\u00f8re m\u00e5l og ansvarsfordeling.<\/p>\n<p>Utarbeidelsen av IP kan lette noe av ansvaret for foreldre eller foresatte, og den skal alltid utformes i samarbeid med dem. N\u00e5r barnet blir stort nok, vil mange barn \u00f8nske \u00e5 delta aktivt i planleggingen.<\/p>\n<p><span data-contrast=\"none\"><\/span><\/p>\n<p><span data-ccp-props=\"{&quot;134233117&quot;:false,&quot;134233118&quot;:false,&quot;335559738&quot;:0,&quot;335559739&quot;:150}\"><\/span><\/p>\n<p>[\/et_pb_text][et_pb_text quote_border_color=&raquo;gcid-edcc47c2-e936-4ba2-8e6c-8ca8cb2c2a05&#8243; _builder_version=&raquo;4.21.0&#8243; _module_preset=&raquo;default&raquo; text_font=&raquo;Poppins|300|||||||&raquo; text_text_color=&raquo;gcid-26e97d0d-b127-4ce1-b597-0df3fb01df24&#8243; text_font_size=&raquo;16px&raquo; text_line_height=&raquo;1.8em&raquo; link_font=&raquo;Poppins|500|||||||&raquo; link_text_color=&raquo;gcid-edcc47c2-e936-4ba2-8e6c-8ca8cb2c2a05&#8243; header_2_font_size=&raquo;22px&raquo; custom_padding=&raquo;||0px|||&raquo; global_colors_info=&raquo;{%22gcid-26e97d0d-b127-4ce1-b597-0df3fb01df24%22:%91%22text_text_color%22%93,%22gcid-edcc47c2-e936-4ba2-8e6c-8ca8cb2c2a05%22:%91%22quote_border_color%22,%22link_text_color%22%93}&raquo;]<\/p>\n<h2 aria-level=\"2\"><strong><span style=\"color: #050267;\">Ansvarsgruppe\u00a0<\/span><\/strong><\/h2>\n<p>For \u00e5 sikre tverrfaglig samarbeid og koordinerte tjenester som er beskrevet i IPen, b\u00f8r det etableres en ansvarsgruppe. Denne gruppen best\u00e5r av personer som er n\u00e6rmest barnet, inkludert foreldre eller foresatte, behandlere, representanter fra barnehage eller skole (l\u00e6rer, SFO-assistent, helses\u00f8ster), fastlege og andre relevante personer.<\/p>\n<p>Det b\u00f8r utpekes en koordinator i ansvarsgruppen som skal sikre fremdrift og koordinering av tiltakene. Frekvensen og m\u00e5ten gruppen m\u00f8tes p\u00e5 er individuelt, men det anbefales ofte \u00e5 m\u00f8tes f\u00f8r st\u00f8rre endringer som skolestart eller endringer i behandlingsregimer for \u00e5 planlegge og tilrettelegge best mulig.<\/p>\n<p>[\/et_pb_text][et_pb_toggle title=&raquo;Nav og Helfo&raquo; open_toggle_text_color=&raquo;gcid-26e97d0d-b127-4ce1-b597-0df3fb01df24&#8243; open_toggle_background_color=&raquo;RGBA(255,255,255,0)&raquo; closed_toggle_background_color=&raquo;gcid-edcc47c2-e936-4ba2-8e6c-8ca8cb2c2a05&#8243; icon_color=&raquo;gcid-def3f79a-900d-4425-86b8-efdc1c9633a6&#8243; toggle_icon=&raquo;&#x50;||divi||400&#8243; use_icon_font_size=&raquo;on&raquo; icon_font_size=&raquo;20px&raquo; open_icon_color=&raquo;gcid-edcc47c2-e936-4ba2-8e6c-8ca8cb2c2a05&#8243; open_toggle_icon=&raquo;&#x4f;||divi||400&#8243; open_use_icon_font_size=&raquo;on&raquo; open_icon_font_size=&raquo;20px&raquo; _builder_version=&raquo;4.21.0&#8243; _module_preset=&raquo;default&raquo; title_text_color=&raquo;#FFFFFF&raquo; title_font=&raquo;|600|||||||&raquo; title_font_size=&raquo;18px&raquo; body_text_color=&raquo;gcid-26e97d0d-b127-4ce1-b597-0df3fb01df24&#8243; body_link_text_color=&raquo;gcid-edcc47c2-e936-4ba2-8e6c-8ca8cb2c2a05&#8243; custom_margin=&raquo;10px||10px||false|false&raquo; custom_padding=&raquo;||||false|false&raquo; border_width_all=&raquo;0px&raquo; locked=&raquo;off&raquo; global_colors_info=&raquo;{%22gcid-def3f79a-900d-4425-86b8-efdc1c9633a6%22:%91%22icon_color%22%93,%22gcid-26e97d0d-b127-4ce1-b597-0df3fb01df24%22:%91%22open_toggle_text_color%22,%22body_text_color%22%93,%22gcid-edcc47c2-e936-4ba2-8e6c-8ca8cb2c2a05%22:%91%22open_icon_color%22,%22closed_toggle_background_color%22,%22body_link_text_color%22%93}&raquo;]<\/p>\n<p>NAV (Arbeids- og velferdsforvaltningen) og Helfo (Helse\u00f8konomiforvaltningen) er viktige instanser som kan bist\u00e5 personer med cystisk fibrose (CF) og deres familier p\u00e5 ulike m\u00e5ter. Disse kontorene kan bist\u00e5 med f\u00f8lgende:<\/p>\n<ul>\n<li>Reiseutgifter<\/li>\n<li>Utgifter til medisiner<\/li>\n<li>Hjelpemidler<\/li>\n<li>Grunn- og hjelpest\u00f8nad<\/li>\n<li>Oppl\u00e6ringspenger, pleie- og omsorgspenger<\/li>\n<li>Omsorgsl\u00f8nn<\/li>\n<li>Avlastning og st\u00f8ttekontakt<\/li>\n<\/ul>\n<p>&nbsp;<\/p>\n<ul><\/ul>\n<p>[\/et_pb_toggle][et_pb_toggle title=&raquo;Jungelh\u00e5ndboka&raquo; open_toggle_text_color=&raquo;gcid-26e97d0d-b127-4ce1-b597-0df3fb01df24&#8243; open_toggle_background_color=&raquo;RGBA(255,255,255,0)&raquo; closed_toggle_background_color=&raquo;gcid-edcc47c2-e936-4ba2-8e6c-8ca8cb2c2a05&#8243; icon_color=&raquo;gcid-def3f79a-900d-4425-86b8-efdc1c9633a6&#8243; toggle_icon=&raquo;&#x50;||divi||400&#8243; use_icon_font_size=&raquo;on&raquo; icon_font_size=&raquo;20px&raquo; open_icon_color=&raquo;gcid-edcc47c2-e936-4ba2-8e6c-8ca8cb2c2a05&#8243; open_toggle_icon=&raquo;&#x4f;||divi||400&#8243; open_use_icon_font_size=&raquo;on&raquo; open_icon_font_size=&raquo;20px&raquo; _builder_version=&raquo;4.21.0&#8243; _module_preset=&raquo;default&raquo; title_text_color=&raquo;#FFFFFF&raquo; title_font=&raquo;|600|||||||&raquo; title_font_size=&raquo;18px&raquo; body_text_color=&raquo;gcid-26e97d0d-b127-4ce1-b597-0df3fb01df24&#8243; body_link_text_color=&raquo;gcid-edcc47c2-e936-4ba2-8e6c-8ca8cb2c2a05&#8243; custom_margin=&raquo;10px||10px||false|false&raquo; custom_padding=&raquo;||||false|false&raquo; border_width_all=&raquo;0px&raquo; locked=&raquo;off&raquo; global_colors_info=&raquo;{%22gcid-def3f79a-900d-4425-86b8-efdc1c9633a6%22:%91%22icon_color%22%93,%22gcid-26e97d0d-b127-4ce1-b597-0df3fb01df24%22:%91%22open_toggle_text_color%22,%22body_text_color%22%93,%22gcid-edcc47c2-e936-4ba2-8e6c-8ca8cb2c2a05%22:%91%22open_icon_color%22,%22closed_toggle_background_color%22,%22body_link_text_color%22%93}&raquo;]<\/p>\n<p>&laquo;Jungelh\u00e5ndboka&raquo; utgis \u00e5rlig av Funksjonshemmedes Fellesorganisasjon (FFO) og er en oppdatert guide som gir inng\u00e5ende informasjon om lover og rettigheter innenfor velferdsretten. Denne boken er et uvurderlig oppslagsverk hvor alle relevante hjelpeordninger er grundig omtalt. Den tilbyr en omfattende oversikt som er spesielt verdifull for personer med cystisk fibrose (CF) og andre som lever med funksjonsnedsettelser. Vi anbefaler sterkt &laquo;Jungelh\u00e5ndboka&raquo; som en ressurs for \u00e5 navigere i det komplekse landskapet av st\u00f8tteordninger og rettigheter.<\/p>\n<ul><\/ul>\n<p>[\/et_pb_toggle][et_pb_image src=&raquo;https:\/\/cfnorge.bwod.dev\/wp-content\/uploads\/2023\/09\/alex-pasarelu-S8BW-Wx9G8I-unsplash-scaled.jpg&raquo; title_text=&raquo;alex-pasarelu-S8BW-Wx9G8I-unsplash&raquo; _builder_version=&raquo;4.21.0&#8243; _module_preset=&raquo;default&raquo; custom_margin=&raquo;51px||62px|||&raquo; global_colors_info=&raquo;{}&raquo;][\/et_pb_image][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=&raquo;1&#8243; disabled_on=&raquo;on|on|off&raquo; _builder_version=&raquo;4.21.0&#8243; _module_preset=&raquo;default&raquo; background_color=&raquo;gcid-edcc47c2-e936-4ba2-8e6c-8ca8cb2c2a05&#8243; custom_padding=&raquo;||0px||false|false&raquo; global_colors_info=&raquo;{%22gcid-edcc47c2-e936-4ba2-8e6c-8ca8cb2c2a05%22:%91%22background_color%22%93}&raquo;][et_pb_row column_structure=&raquo;1_2,1_2&#8243; 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header_2_font=&raquo;Poppins|600|||||||&raquo; header_2_text_color=&raquo;#FFFFFF&raquo; header_2_font_size=&raquo;30px&raquo; header_3_font=&raquo;Poppins||||||||&raquo; header_3_text_color=&raquo;#FFFFFF&raquo; header_3_font_size=&raquo;20px&raquo; header_3_line_height=&raquo;1.5em&raquo; custom_margin=&raquo;74px||18px|||&raquo; global_colors_info=&raquo;{}&raquo;]<\/p>\n<h2>St\u00f8tt oss<\/h2>\n<h3>Vi er veldig glade for alle sm\u00e5<br \/>og store gaver til v\u00e5rt arbeid.<\/h3>\n<p>[\/et_pb_text][et_pb_button button_url=&raquo;@ET-DC@eyJkeW5hbWljIjp0cnVlLCJjb250ZW50IjoicG9zdF9saW5rX3VybF9wYWdlIiwic2V0dGluZ3MiOnsicG9zdF9pZCI6IjQ1NyJ9fQ==@&raquo; button_text=&raquo;LES HVORDAN HER&raquo; _builder_version=&raquo;4.21.0&#8243; _dynamic_attributes=&raquo;button_url&raquo; _module_preset=&raquo;default&raquo; custom_button=&raquo;on&raquo; button_text_size=&raquo;16px&raquo; button_text_color=&raquo;#FFFFFF&raquo; button_bg_color=&raquo;gcid-26e97d0d-b127-4ce1-b597-0df3fb01df24&#8243; button_border_width=&raquo;0px&raquo; button_border_radius=&raquo;100px&raquo; global_colors_info=&raquo;{%22gcid-26e97d0d-b127-4ce1-b597-0df3fb01df24%22:%91%22button_bg_color%22%93}&raquo;][\/et_pb_button][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=&raquo;1&#8243; disabled_on=&raquo;off|off|on&raquo; _builder_version=&raquo;4.21.0&#8243; _module_preset=&raquo;default&raquo; background_color=&raquo;gcid-edcc47c2-e936-4ba2-8e6c-8ca8cb2c2a05&#8243; custom_padding=&raquo;21px||0px||false|false&raquo; locked=&raquo;off&raquo; global_colors_info=&raquo;{%22gcid-edcc47c2-e936-4ba2-8e6c-8ca8cb2c2a05%22:%91%22background_color%22%93}&raquo;][et_pb_row _builder_version=&raquo;4.21.0&#8243; _module_preset=&raquo;default&raquo; custom_margin=&raquo;13px|auto|0px|auto|false|false&raquo; custom_padding=&raquo;7px||0px||false|false&raquo; global_colors_info=&raquo;{}&raquo;][et_pb_column type=&raquo;4_4&#8243; _builder_version=&raquo;4.21.0&#8243; _module_preset=&raquo;default&raquo; global_colors_info=&raquo;{}&raquo;][et_pb_text _builder_version=&raquo;4.21.0&#8243; _module_preset=&raquo;default&raquo; header_2_font=&raquo;Poppins|600|||||||&raquo; header_2_text_color=&raquo;#FFFFFF&raquo; header_2_font_size=&raquo;30px&raquo; header_3_font=&raquo;Poppins||||||||&raquo; header_3_text_color=&raquo;#FFFFFF&raquo; header_3_font_size=&raquo;20px&raquo; header_3_line_height=&raquo;1.5em&raquo; custom_margin=&raquo;26px|||||&raquo; global_colors_info=&raquo;{}&raquo;]<\/p>\n<h2>St\u00f8tt oss<\/h2>\n<h3>Vi er veldig glade for alle sm\u00e5<br \/>og store gaver til v\u00e5rt arbeid.<\/h3>\n<p>[\/et_pb_text][et_pb_button button_url=&raquo;@ET-DC@eyJkeW5hbWljIjp0cnVlLCJjb250ZW50IjoicG9zdF9saW5rX3VybF9wYWdlIiwic2V0dGluZ3MiOnsicG9zdF9pZCI6IjQ1NyJ9fQ==@&raquo; button_text=&raquo;LES HVORDAN HER&raquo; _builder_version=&raquo;4.21.0&#8243; _dynamic_attributes=&raquo;button_url&raquo; _module_preset=&raquo;default&raquo; custom_button=&raquo;on&raquo; button_text_size=&raquo;16px&raquo; button_text_color=&raquo;#FFFFFF&raquo; button_bg_color=&raquo;gcid-26e97d0d-b127-4ce1-b597-0df3fb01df24&#8243; button_border_width=&raquo;0px&raquo; button_border_radius=&raquo;100px&raquo; custom_margin=&raquo;||11px|||&raquo; global_colors_info=&raquo;{%22gcid-26e97d0d-b127-4ce1-b597-0df3fb01df24%22:%91%22button_bg_color%22%93}&raquo;][\/et_pb_button][et_pb_image src=&raquo;https:\/\/cfnorge.bwod.dev\/wp-content\/uploads\/2023\/08\/Stott-oss-illustrasjon-CF-2-1.png&raquo; title_text=&raquo;St\u00f8tt-oss-illustrasjon-CF-2&#8243; _builder_version=&raquo;4.21.0&#8243; _module_preset=&raquo;default&raquo; max_width=&raquo;64%&raquo; max_width_tablet=&raquo;50%&raquo; max_width_phone=&raquo;50%&raquo; max_width_last_edited=&raquo;on|tablet&raquo; module_alignment=&raquo;right&raquo; custom_margin_tablet=&raquo;-40px||||false|false&raquo; custom_margin_phone=&raquo;-40px||||false|false&raquo; custom_margin_last_edited=&raquo;on|tablet&raquo; global_colors_info=&raquo;{}&raquo;][\/et_pb_image][\/et_pb_column][\/et_pb_row][\/et_pb_section]<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Barn med cystisk fibroseIngen barn er like, og dette gjelder naturligvis ogs\u00e5 barn med cystisk fibrose (CF), b\u00e5de i personlighet og sykdomsbilde. Alle barn vil oppdage, utforske og utvikle seg, men n\u00e5r et barn har CF, er det noen hensyn som m\u00e5 tas. Dette krever individuell behandling tilpasset hvert barn og dets sykdom og behov. [&hellip;]<\/p>\n","protected":false},"author":5,"featured_media":0,"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-983","page","type-page","status-publish","hentry"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.3 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Barn med cystisk fibrose - CF Norge<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.cfnorge.no\/en\/barn-med-cystisk-fibrose\/\" \/>\n<meta property=\"og:locale\" content=\"en_GB\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Barn med cystisk fibrose - CF Norge\" \/>\n<meta property=\"og:description\" content=\"Barn med cystisk fibroseIngen barn er like, og dette gjelder naturligvis ogs\u00e5 barn med cystisk fibrose (CF), b\u00e5de i personlighet og sykdomsbilde. Alle barn vil oppdage, utforske og utvikle seg, men n\u00e5r et barn har CF, er det noen hensyn som m\u00e5 tas. Dette krever individuell behandling tilpasset hvert barn og dets sykdom og behov. 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