{"id":2495,"date":"2025-11-10T11:00:06","date_gmt":"2025-11-10T10:00:06","guid":{"rendered":"https:\/\/cfnorge.no\/?page_id=2495"},"modified":"2025-11-10T11:00:08","modified_gmt":"2025-11-10T10:00:08","slug":"forskning","status":"publish","type":"page","link":"https:\/\/www.cfnorge.no\/en\/pcd\/forskning\/","title":{"rendered":"Research"},"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; bottom_divider_style=&raquo;wave&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; max_width=&raquo;900px&raquo; custom_margin=&raquo;|auto|77px|auto||&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;||1px|||&raquo; global_colors_info=&raquo;{%22gcid-26e97d0d-b127-4ce1-b597-0df3fb01df24%22:%91%22header_text_color%22%93}&raquo;]<\/p>\n<h1><span data-contrast=\"none\" xml:lang=\"NB-NO\" lang=\"NB-NO\" class=\"TextRun SCXW45429628 BCX0\"><span class=\"NormalTextRun SCXW45429628 BCX0\">Prim\u00e6r Cilie Dyskinesi<\/span><\/span><span class=\"EOP SCXW45429628 BCX0\" data-ccp-props=\"{&quot;335559738&quot;:300,&quot;335559739&quot;:150}\">\u00a0<\/span><\/h1>\n<p>[\/et_pb_text][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; locked=&raquo;off&raquo; global_colors_info=&raquo;{%22gcid-26e97d0d-b127-4ce1-b597-0df3fb01df24%22:%91%22text_text_color%22%93}&raquo;]<\/p>\n<p>\u00a0Prim\u00e6r ciliedyskinesi (PCD) er en sjelden, arvelig sykdom hvor man blir f\u00f8dt med flimmerh\u00e5r (cilier) som enten ikke fungerer normalt eller som mangler helt. Dette kan f\u00f8re til luftveisproblemer, da ciliene normalt hjelper med \u00e5 fjerne slim og partikler fra luftveiene.<\/p>\n<p>Gjennom CF Norge vil PCD-pasienter f\u00e5 mulighet til \u00e5 komme i kontakt med andre i samme situasjon og f\u00e5 tilgang til god, faglig informasjon gjennom en felles kanal. PCD ligger under CF Norge fordi prim\u00e6r ciliedyskinesi behandles p\u00e5 samme m\u00e5te som cystisk fibrose<\/p>\n<p>[\/et_pb_text][\/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; custom_padding=&raquo;26px|||||&raquo; global_colors_info=&raquo;{}&raquo;][et_pb_row _builder_version=&raquo;4.21.0&#8243; _module_preset=&raquo;default&raquo; max_width=&raquo;900px&raquo; custom_margin=&raquo;|auto|22px|auto||&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_image src=&raquo;https:\/\/cfnorge.bwod.dev\/wp-content\/uploads\/2023\/09\/artur-aldyrkhanov-3bwMp-TyxOE-unsplash-scaled.jpg&raquo; title_text=&raquo;artur-aldyrkhanov-3bwMp-TyxOE-unsplash&raquo; _builder_version=&raquo;4.21.0&#8243; _module_preset=&raquo;default&raquo; custom_margin=&raquo;||41px|||&raquo; global_colors_info=&raquo;{}&raquo;][\/et_pb_image][et_pb_toggle title=&raquo;Hva betyr PCD?&raquo; open=&raquo;on&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; 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; box_shadow_style=&raquo;preset1&#8243; 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<ul>\n<li><strong>Prim\u00e6r:<\/strong> Betyr at det ikke er noen p\u00e5virkning utenfra. PCD er arvelig.<\/li>\n<li><strong>Cilie:<\/strong> Kommer fra latin og betyr vibrerende h\u00e5r. P\u00e5 norsk kalles cilier for flimmerh\u00e5r. Kroppen har flere steder hvor det forekommer flimmerh\u00e5r, for eksempel i luftveiene og forplantningssystemet. Cilier er veldig sm\u00e5 og kan bare ses gjennom et mikroskop.<\/li>\n<li><strong>Dyskinesi:<\/strong> Betyr &laquo;d\u00e5rlig bevegelsesevne&raquo; eller &laquo;uorganisert bevegelse&raquo;.<\/li>\n<\/ul>\n<p>[\/et_pb_toggle][\/et_pb_column][\/et_pb_row][et_pb_row _builder_version=&raquo;4.21.0&#8243; _module_preset=&raquo;default&raquo; max_width=&raquo;900px&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_divider color=&raquo;gcid-26e97d0d-b127-4ce1-b597-0df3fb01df24&#8243; _builder_version=&raquo;4.21.0&#8243; _module_preset=&raquo;default&raquo; global_colors_info=&raquo;{%22gcid-26e97d0d-b127-4ce1-b597-0df3fb01df24%22:%91%22color%22%93}&raquo;][\/et_pb_divider][et_pb_code _builder_version=&raquo;4.21.0&#8243; _module_preset=&raquo;default&raquo; text_orientation=&raquo;center&raquo; custom_margin=&raquo;||41px|||&raquo; global_colors_info=&raquo;{}&raquo;]<iframe allow=\"autoplay *; encrypted-media *; fullscreen *; clipboard-write\" frameborder=\"0\" height=\"175\" style=\"width:100%;max-width:660px;overflow:hidden;border-radius:10px;\" sandbox=\"allow-forms allow-popups allow-same-origin allow-scripts allow-storage-access-by-user-activation allow-top-navigation-by-user-activation\" src=\"https:\/\/embed.podcasts.apple.com\/us\/podcast\/speilvendte-organer-og-forkj%C3%B8lelsessymptomer-kan-det\/id1507198466?i=1000641832670\"><\/iframe>[\/et_pb_code][et_pb_divider color=&raquo;gcid-26e97d0d-b127-4ce1-b597-0df3fb01df24&#8243; _builder_version=&raquo;4.21.0&#8243; _module_preset=&raquo;default&raquo; global_colors_info=&raquo;{%22gcid-26e97d0d-b127-4ce1-b597-0df3fb01df24%22:%91%22color%22%93}&raquo;][\/et_pb_divider][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;||1px|||&raquo; global_colors_info=&raquo;{%22gcid-26e97d0d-b127-4ce1-b597-0df3fb01df24%22:%91%22header_text_color%22%93}&raquo;]<\/p>\n<h1><span data-contrast=\"none\" xml:lang=\"NB-NO\" lang=\"NB-NO\" class=\"TextRun SCXW45429628 BCX0\"><span class=\"NormalTextRun SCXW45429628 BCX0\">Hva kommer PCD av? <\/span><\/span><span class=\"EOP SCXW45429628 BCX0\" data-ccp-props=\"{&quot;335559738&quot;:300,&quot;335559739&quot;:150}\">\u00a0<\/span><\/h1>\n<p>[\/et_pb_text][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; locked=&raquo;off&raquo; global_colors_info=&raquo;{%22gcid-26e97d0d-b127-4ce1-b597-0df3fb01df24%22:%91%22text_text_color%22%93}&raquo;]<\/p>\n<p>Prim\u00e6r cili\u00e6r dyskinesi (PCD) er en arvelig sykdom hvor man blir f\u00f8dt med flimmerh\u00e5r som ikke fungerer normalt, eller som mangler helt. Flimmerh\u00e5rene finnes p\u00e5 overflaten av luftveiene, som inkluderer nese, bihuler, svelg, bronkier og lunger. Normale flimmerh\u00e5r er hele tiden i aktivitet og bidrar til \u00e5 skyve overfl\u00f8dig slim opp fra lungene og ut mot nese og bihuler.<\/p>\n<p>N\u00e5r flimmerh\u00e5rene ikke fungerer, blir slimet som produseres liggende i ro og samler seg opp. Dette f\u00f8rer til at det dannes slimpropper i luftr\u00f8rene, som hindrer luftpassasjen. Det samme skjer i nese og bihuler. Slim som ligger i ro, gir ogs\u00e5 gode vekstbetingelser for bakterier. En person med PCD blir derfor ofte plaget med gjentatte infeksjoner i luftveiene.<\/p>\n<p>[\/et_pb_text][et_pb_toggle title=&raquo;Vanlige symptomer p\u00e5 PCD&raquo; open=&raquo;on&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; 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;||62px|||&raquo; custom_padding=&raquo;35px||35px||false|false&raquo; border_width_all=&raquo;0px&raquo; box_shadow_style=&raquo;preset3&#8243; 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><strong>Evigvarende \u201cforkj\u00f8lelse\u201d og lungeinfeksjoner<\/strong><\/p>\n<p>Hos friske mennesker lager flimmerh\u00e5rene en koordinert \u201cb\u00f8lgebevegelse\u201d som renser ut bakterier og sm\u00e5 partikler fra lungene og opp i svelget.<\/p>\n<p>Hos en person med PCD fungerer ikke flimmerh\u00e5rene slik de skal. De sl\u00e5r enten for fort, for sakte eller ukoordinert. Kroppen bruker derfor lengre tid p\u00e5 \u00e5 f\u00e5 ut slimet, s\u00e5 bakterier og partikler blir liggende i lungene, noe som igjen f\u00f8rer til \u00f8kt risiko for infeksjoner.<\/p>\n<p>Dette resulterer ofte i forkj\u00f8lelseslignende symptomer. Men dette er ikke forkj\u00f8lelse, snarere en kronisk opphopning av slim i luftveiene, som uten mobilisering kan gi hyppige bakterielle infeksjoner. De fleste PCD-pasienter lider av denne konstante forkj\u00f8lelseslignende tilstanden.<\/p>\n<p>Gea Restad er mor til et barn med PCD og har utdannet seg til sykepleier. Sammen med Ann-Cahtrin Linqvist Leonardsen har hun skrevet artikkelen <a href=\"https:\/\/sykepleien.no\/forskning\/2019\/04\/hyppige-luftveisinfeksjoner-kan-vaere-symptom-pa-en-arvelig-sykdom\"><em>Hyppige luftveisinfeksjoner kan v\u00e6re symptom p\u00e5 arvelig sykdom<\/em><\/a> i tidsskriftet Sykepleien. Hun skriver: &laquo;Barn som stadig er \u2018forkj\u00f8let\u2019 kan ha den sjeldne sykdommen prim\u00e6r ciliedyskinesi. Veien frem til en diagnose kan v\u00e6re lang, og noen foreldre opplever at de ikke blir tatt p\u00e5 alvor av helsepersonell.&raquo; Hun beskriver videre foreldres opplevelse av hvor vanskelig det er \u00e5 bli tatt p\u00e5 alvor og f\u00e5 en diagnose.<\/p>\n<p>[\/et_pb_toggle][et_pb_toggle title=&raquo;Sp\u00f8rsm\u00e5l og behandling for PCD &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><span data-contrast=\"none\">Om man har sp\u00f8rsm\u00e5l om diagnostisering og behandling for PCD, kan man henvende seg til<\/span><span data-contrast=\"auto\">\u202fNorsk senter for cystisk fibrose, <\/span><span data-contrast=\"none\">NSCF, p\u00e5 Oslo universitetssykehus.\u202fNSCF er kompetansesenter for pasienter med PCD. Sammen med Rikshospitalet st\u00e5r Norsk senter for cystisk fibrose for behandlingstilbudet til PCD. I tillegg vil lokale sykehus og fastlege v\u00e6re viktige for pasienter med PCD.<\/span><span data-ccp-props=\"{&quot;335559739&quot;:150}\">\u00a0<\/span><\/p>\n<p><span data-ccp-props=\"{&quot;335559739&quot;:150}\"><\/span><\/p>\n<p><strong><span style=\"color: #050267;\">Hvorfor er PCD under cfnorge.no?\u00a0<\/span><\/strong><\/p>\n<p><span data-contrast=\"none\">cfnorge.no er nettsiden til Norsk forening for cystisk fibrose, NFCF. Pasienter og p\u00e5r\u00f8rende med PCD har valgt \u00e5 bli en undergruppe av NFCF og cfnorge.no fordi de to diagnosene har viktige fellestrekk b\u00e5de med hensyn til symptomer og behandling, og derfor kan dele b\u00e5de erfaringer og behandlingsbehov. Prim\u00e6r ciliedyskinesi behandles som cystisk fibrose \u2013 selv om det ikke finnes sikker kunnskap om at dette er effektivt.<\/span><span data-ccp-props=\"{&quot;335559739&quot;:150}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"none\">Ved at PCD er en undergruppe av NFCF, vil p\u00e5r\u00f8rende og pasienter i Norge f\u00e5 et felles tilbud, mulighet for kontakt med andre i samme situasjon og god, faglig informasjon gjennom en felles kanal.\u202fVidere \u00f8nsker vi et samarbeid med Norsk senter for cystisk fibrose\u202ffor \u00e5 \u00f8ke bevissthet rundt sykdommen og f\u00e5 frem et felles behandlingstilbud.<\/span><\/p>\n<p><span data-contrast=\"none\"><\/span><\/p>\n<p><strong><span style=\"color: #050267;\">Hvilke tilbud har NFCF til PCD-pasienter og deres p\u00e5r\u00f8rende?\u00a0<\/span><\/strong><\/p>\n<ul>\n<li data-leveltext=\"\uf0b7\" data-font=\"Symbol\" data-listid=\"4\" data-list-defn-props=\"{&quot;335552541&quot;:1,&quot;335559684&quot;:-2,&quot;335559685&quot;:720,&quot;335559991&quot;:360,&quot;469769226&quot;:&quot;Symbol&quot;,&quot;469769242&quot;:[8226],&quot;469777803&quot;:&quot;left&quot;,&quot;469777804&quot;:&quot;\uf0b7&quot;,&quot;469777815&quot;:&quot;multilevel&quot;}\" aria-setsize=\"-1\" data-aria-posinset=\"1\" data-aria-level=\"1\"><span data-contrast=\"auto\">Likepersoner\u202f\u2013 NFCF har et velfungerende likepersonsprogram som PCD allerede er en del av. Vi har to likepersoner. Disse kan kontaktes for en uforpliktende og st\u00f8ttende prat om alle aspekter ved det \u00e5 v\u00e6re p\u00e5r\u00f8rende eller pasient. Likepersonene er medlemmer i foreningen som sitter p\u00e5 den praktiske erfaringen fra livet som pasient\/p\u00e5r\u00f8rende.<\/span><span data-ccp-props=\"{&quot;134233117&quot;:true,&quot;134233118&quot;:true}\">\u00a0<\/span><\/li>\n<li data-leveltext=\"\uf0b7\" data-font=\"Symbol\" data-listid=\"4\" data-list-defn-props=\"{&quot;335552541&quot;:1,&quot;335559684&quot;:-2,&quot;335559685&quot;:720,&quot;335559991&quot;:360,&quot;469769226&quot;:&quot;Symbol&quot;,&quot;469769242&quot;:[8226],&quot;469777803&quot;:&quot;left&quot;,&quot;469777804&quot;:&quot;\uf0b7&quot;,&quot;469777815&quot;:&quot;multilevel&quot;}\" aria-setsize=\"-1\" data-aria-posinset=\"2\" data-aria-level=\"1\"><span data-contrast=\"auto\">Lukket \u202ffacebookgruppe \u2013 PCD\u202f<\/span><span data-contrast=\"none\">har en facebookgruppe\u202f som er til for pasienter\/p\u00e5r\u00f8rende. En moderator passer p\u00e5 at innlegg og diskusjoner holdes innenfor reglementet til NFCF, samt at likepersonene er aktive medlemmer som svarer p\u00e5 sp\u00f8rsm\u00e5l, eller tar kontakt utenfor hovedsiden. \u202f<\/span><span data-ccp-props=\"{&quot;134233117&quot;:true,&quot;134233118&quot;:true}\">\u00a0<\/span><\/li>\n<li data-leveltext=\"\uf0b7\" data-font=\"Symbol\" data-listid=\"4\" data-list-defn-props=\"{&quot;335552541&quot;:1,&quot;335559684&quot;:-2,&quot;335559685&quot;:720,&quot;335559991&quot;:360,&quot;469769226&quot;:&quot;Symbol&quot;,&quot;469769242&quot;:[8226],&quot;469777803&quot;:&quot;left&quot;,&quot;469777804&quot;:&quot;\uf0b7&quot;,&quot;469777815&quot;:&quot;multilevel&quot;}\" aria-setsize=\"-1\" data-aria-posinset=\"3\" data-aria-level=\"1\"><span data-contrast=\"none\">\u00c5rsm\u00f8te- og oppl\u00e6ringshelgen &#8211; I april hvert \u00e5r gjennomf\u00f8res \u00e5rsm\u00f8te- og oppl\u00e6ringshelgen. Her m\u00f8tes store og sm\u00e5 til en trivelig helg hvor hovedm\u00e5let er \u00e5 f\u00e5 oppl\u00e6ring om sykdommene (CF og PCD) i form av aktuelle temaer og foredragsholdere. Helgen er ogs\u00e5 en sosial arena hvor man blir kjent med spennende mennesker og f\u00e5r mulighet til \u00e5 dele erfaringer med hverandre.\u202f<\/span><span data-ccp-props=\"{&quot;134233117&quot;:true,&quot;134233118&quot;:true}\">\u00a0<\/span><\/li>\n<li data-leveltext=\"\uf0b7\" data-font=\"Symbol\" data-listid=\"4\" data-list-defn-props=\"{&quot;335552541&quot;:1,&quot;335559684&quot;:-2,&quot;335559685&quot;:720,&quot;335559991&quot;:360,&quot;469769226&quot;:&quot;Symbol&quot;,&quot;469769242&quot;:[8226],&quot;469777803&quot;:&quot;left&quot;,&quot;469777804&quot;:&quot;\uf0b7&quot;,&quot;469777815&quot;:&quot;multilevel&quot;}\" aria-setsize=\"-1\" data-aria-posinset=\"4\" data-aria-level=\"1\"><span data-contrast=\"none\">Trivselsarrangement \u2013 NFCF har flere arrangementer i \u00e5ret for \u00e5 gi medlemmene muligheter til \u00e5 kose seg sammen med andre i samme situasjon. Arrangementene er fordelt utover hele landet, og settes opp i regi av regionene.\u202f<\/span><span data-ccp-props=\"{&quot;134233117&quot;:true,&quot;134233118&quot;:true}\">\u00a0<\/span><\/li>\n<\/ul>\n<p>[\/et_pb_toggle][et_pb_toggle title=&raquo;Aktuelle artikler om PCD &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><span data-contrast=\"none\">August 2020:\u202f<\/span><a href=\"https:\/\/oslo-universitetssykehus.no\/avdelinger\/barne-og-ungdomsklinikken\/avdeling-for-sjeldne-diagnoser\/norsk-senter-for-cystisk-fibrose\/primer-cilier-dyskinesi-er-underdiagnostisert\"><span data-contrast=\"none\">Prim\u00e6r cili\u00e6r dyskinesi er underdiagnostisert<\/span><\/a><span data-contrast=\"none\">. Artikkel om PCD hos Norsk senter for cystisk fibrose.<\/span><span data-ccp-props=\"{&quot;134233117&quot;:true,&quot;134233118&quot;:true}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"none\">August 2020:\u202f<\/span><a href=\"https:\/\/ekspertsykehusetblog.wordpress.com\/2020\/08\/20\/kronisk-vat-hoste-hos-barnet-kan-vaere-pcd\/\"><span data-contrast=\"none\">Kronisk v\u00e5t hoste hos barnet kan v\u00e6re\u202fPCD<\/span><\/a><span data-contrast=\"none\">.\u202fArtikkel p\u00e5 Ekspertsykehusets blogg av Suzanne Crowley.<\/span><span data-ccp-props=\"{&quot;134233117&quot;:true,&quot;134233118&quot;:true}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"none\">Les artikkel om\u202f<\/span><a href=\"http:\/\/tidsskriftet.no\/article\/3441217\"><span data-contrast=\"none\">Prim\u00e6r ciliedyskinesi i Tidsskrift for Den norske legeforening<\/span><\/a><span data-contrast=\"none\">. Artikkelen er skrevet av Suzanne Crowley, overlege ved Rikshospitalet og den som har mest kompetanse p\u00e5 PCD i Norge.<\/span><span data-ccp-props=\"{&quot;134233117&quot;:true,&quot;134233118&quot;:true}\">\u00a0<\/span><\/p>\n<p>[\/et_pb_toggle][\/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-f60bfea8-f451-489d-8bfd-27e12ee36365&#8243; custom_padding=&raquo;||0px||false|false&raquo; global_colors_info=&raquo;{%22gcid-f60bfea8-f451-489d-8bfd-27e12ee36365%22:%91%22background_color%22%93}&raquo;][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;||0px||false|false&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_image src=&raquo;https:\/\/cfnorge.bwod.dev\/wp-content\/uploads\/2023\/08\/Stott-oss-illustrasjon-CF-1.png&raquo; title_text=&raquo;St\u00f8tt-oss-illustrasjon-CF&raquo; _builder_version=&raquo;4.21.0&#8243; _module_preset=&raquo;default&raquo; width=&raquo;70%&raquo; module_alignment=&raquo;center&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_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;40px&raquo; header_3_font=&raquo;Poppins||||||||&raquo; header_3_text_color=&raquo;#FFFFFF&raquo; header_3_line_height=&raquo;1.5em&raquo; custom_margin=&raquo;50px|||||&raquo; global_colors_info=&raquo;{}&raquo;]<\/p>\n<h2>St\u00f8tt oss<\/h2>\n<h3>Vi er veldig glade for alle sm\u00e5<br \/>\nog 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 om 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-edcc47c2-e936-4ba2-8e6c-8ca8cb2c2a05&#8243; button_border_width=&raquo;0px&raquo; button_border_radius=&raquo;100px&raquo; global_colors_info=&raquo;{%22gcid-edcc47c2-e936-4ba2-8e6c-8ca8cb2c2a05%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-f60bfea8-f451-489d-8bfd-27e12ee36365&#8243; custom_padding=&raquo;||0px||false|false&raquo; global_colors_info=&raquo;{%22gcid-f60bfea8-f451-489d-8bfd-27e12ee36365%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;||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;40px&raquo; header_3_font=&raquo;Poppins||||||||&raquo; header_3_text_color=&raquo;#FFFFFF&raquo; header_3_line_height=&raquo;1.5em&raquo; custom_margin=&raquo;-5px||6px|||&raquo; global_colors_info=&raquo;{}&raquo;]<\/p>\n<h2>St\u00f8tt oss<\/h2>\n<h3>Vi er veldig glade for alle sm\u00e5 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 om 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-edcc47c2-e936-4ba2-8e6c-8ca8cb2c2a05&#8243; button_border_width=&raquo;0px&raquo; button_border_radius=&raquo;100px&raquo; global_colors_info=&raquo;{%22gcid-edcc47c2-e936-4ba2-8e6c-8ca8cb2c2a05%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-1.png&raquo; title_text=&raquo;St\u00f8tt-oss-illustrasjon-CF&raquo; align=&raquo;right&raquo; _builder_version=&raquo;4.21.0&#8243; _module_preset=&raquo;default&raquo; width=&raquo;50%&raquo; width_tablet=&raquo;50%&raquo; width_phone=&raquo;50%&raquo; width_last_edited=&raquo;on|tablet&raquo; max_width_tablet=&raquo;50%&raquo; max_width_phone=&raquo;60%&raquo; max_width_last_edited=&raquo;on|phone&raquo; 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Gjennom CF Norge vil PCD pasienter f\u00e5 mulighet for kontakt med andre i samme situasjon og god, faglig informasjon gjennom en felles kanal.\u202f PCD ligger under CF Norge fordi Prim\u00e6r ciliedyskinesi behandles som cystisk fibrose \u2013 selv om det ikke finnes sikker kunnskap om at dette er effektivt. <\/p>","protected":false},"author":1,"featured_media":0,"parent":444,"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-2495","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>Forskning - CF Norge<\/title>\n<meta name=\"description\" content=\"Prim\u00e6r Cillie Dyskinesi \u2013 PCD, er en arvelig sykdom hvor flimmerh\u00e5rene ikke fungerer slik de skal. 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