{"id":2432,"date":"2025-10-28T10:32:12","date_gmt":"2025-10-28T09:32:12","guid":{"rendered":"https:\/\/cfnorge.no\/?p=2432"},"modified":"2025-12-11T13:35:14","modified_gmt":"2025-12-11T12:35:14","slug":"beat-pcd-pasientkonferanse-2025","status":"publish","type":"post","link":"https:\/\/cfnorge.no\/en\/beat-pcd-pasientkonferanse-2025\/","title":{"rendered":"Oppdatering fra BEAT-PCD Pasientkonferanse 2025"},"content":{"rendered":"<p>[et_pb_section fb_built=&raquo;1&#8243; _builder_version=&raquo;4.21.0&#8243; _module_preset=&raquo;default&raquo; background_color=&raquo;gcid-9e2f3af2-1007-4221-b250-8e35d98c5991&#8243; custom_margin=&raquo;0px||||false|false&raquo; custom_padding=&raquo;0px||||false|false&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; module_alignment=&raquo;center&raquo; custom_margin=&raquo;|auto||92px||&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_button button_url=&raquo;@ET-DC@eyJkeW5hbWljIjp0cnVlLCJjb250ZW50IjoicG9zdF9saW5rX3VybF9wYWdlIiwic2V0dGluZ3MiOnsicG9zdF9pZCI6IjI1NSJ9fQ==@&raquo; button_text=&raquo;Tilbake&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;18px&raquo; button_text_color=&raquo;gcid-edcc47c2-e936-4ba2-8e6c-8ca8cb2c2a05&#8243; button_bg_color=&raquo;gcid-9e2f3af2-1007-4221-b250-8e35d98c5991&#8243; button_border_width=&raquo;0px&raquo; button_border_color=&raquo;gcid-9e2f3af2-1007-4221-b250-8e35d98c5991&#8243; button_border_radius=&raquo;0px&raquo; button_font=&raquo;Poppins||||||||&raquo; button_icon=&raquo;&#x23;||divi||400&#8243; button_icon_placement=&raquo;left&raquo; button_on_hover=&raquo;off&raquo; custom_margin=&raquo;||20px||false|false&raquo; custom_padding=&raquo;||||false|false&raquo; global_colors_info=&raquo;{%22gcid-edcc47c2-e936-4ba2-8e6c-8ca8cb2c2a05%22:%91%22button_text_color%22%93,%22gcid-9e2f3af2-1007-4221-b250-8e35d98c5991%22:%91%22button_border_color%22,%22button_bg_color%22%93}&raquo;][\/et_pb_button][et_pb_image src=&raquo;https:\/\/cfnorge.no\/wp-content\/uploads\/2025\/10\/PCD-konferanse-1.png&raquo; alt=&raquo;Starte p\u00e5 h\u00f8yere utdanning som kronisk syk&raquo; title_text=&raquo;PCD konferanse 1&#8243; _builder_version=&raquo;4.21.0&#8243; _module_preset=&raquo;default&raquo; global_colors_info=&raquo;{}&raquo;][\/et_pb_image][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; hover_enabled=&raquo;0&#8243; locked=&raquo;off&raquo; global_colors_info=&raquo;{%22gcid-26e97d0d-b127-4ce1-b597-0df3fb01df24%22:%91%22header_text_color%22%93}&raquo; sticky_enabled=&raquo;0&#8243;]<\/p>\n<h1><span data-olk-copy-source=\"MessageBody\">Oppdatering fra BEAT-PCD konferanse 2025<\/span><\/h1>\n<p>[\/et_pb_text][et_pb_text admin_label=&raquo;Tekst&raquo; _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; link_font=&raquo;Poppins|500|||||||&raquo; link_text_color=&raquo;gcid-edcc47c2-e936-4ba2-8e6c-8ca8cb2c2a05&#8243; custom_padding=&raquo;||0px|||&raquo; hover_enabled=&raquo;0&#8243; 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%22link_text_color%22%93}&raquo; sticky_enabled=&raquo;0&#8243;]<\/p>\n<p><span>I slutten av november samlet fagfolk, forskere og pasienter seg til \u00a0den \u00e5rlige <\/span><a href=\"https:\/\/beat-pcd.squarespace.com\/events\/2025\/11\/29\/pcd-patient-conference-2025\" target=\"_blank\" rel=\"noopener\"><strong><span>\u00a0<\/span>BEAT-PCD-pasientkonferansen.\u00a0\u00a0<\/strong><\/a><span><\/span> Konferansen ga god innsikt og faglig oppdatering p\u00e5 utfordringer, ny forskning og fremtidige behandlingsmuligheter. Vi har n\u00e5 samlet en oppsummering av noen av de mest sentrale punktene.<\/p>\n<p><strong>Status PCD <\/strong><\/p>\n<p dir=\"auto\">Forekomsten er omtrent 1:7500, og globalt har 76 % av pasientene en genetisk diagnose. Det er kjent over 60 ulike PCD-mutasjoner.<\/p>\n<p dir=\"auto\">Typiske symptomer inkluderer:<\/p>\n<ul dir=\"auto\">\n<li>Pustevansker hos nyf\u00f8dte (75 % trenger pustest\u00f8tte rett etter f\u00f8dsel)<\/li>\n<li>Kronisk v\u00e5t hoste og bronkiektasier<\/li>\n<li>Problemer med nese, bihuler og \u00f8rer<\/li>\n<li>V\u00e6skeansamling i mellom\u00f8ret hos sm\u00e5 barn<\/li>\n<li>Nedsatt fertilitet hos b\u00e5de kvinner og menn<\/li>\n<li>Hos ca. 50 % speilvendte organer (situs inversus)<\/li>\n<\/ul>\n<p dir=\"auto\">Diagnosen stilles ofte sent \u2013 medianalder er 10 \u00e5r. Dette skyldes kompleks diagnostikk og f\u00e5 spesialiserte sentre.<\/p>\n<p dir=\"auto\"><strong>Hvorfor er forskning viktig?<\/strong><\/p>\n<p dir=\"auto\">PCD er en sjelden og komplisert sykdom med begrenset behandling. M\u00e5let med forskningen er tidligere og riktig diagnose, bedre evidens for dagens terapier og\u00a0 utvikling av nye behandlinger, inkludert genbaserte.<\/p>\n<p dir=\"auto\"><strong>Nytt om forskning<\/strong><\/p>\n<p><span style=\"text-decoration: underline;\">Ny godkjent medisin mot betennelse:<\/span> Brensocatib (DPP1-hemmer) ble godkjent i EU i november 2025 for behandling av bronkiektasier uten cystisk fibrose. Medisinen angriper den underliggende betennelsen. Nasjonale beslutninger om pris og refusjon vil avgj\u00f8re n\u00e5r den blir tilgjengelig for paisenter i norge.\u00a0<\/p>\n<p><span style=\"text-decoration: underline;\">Lovende behandling mot Pseudomonas aeruginosa:<\/span> Gremubamab, et monoklonalt antistoff under utpr\u00f8ving, viser gode resultater mot kroniske infeksjoner med denne vanskelige bakterien. I fremtiden kan det erstatte langvarig bruk av inhalasjonsantibiotika.<\/p>\n<p>F\u00f8rste sykdomsmodifiserende studie<strong>:<\/strong> ReCode Therapeutics utvikler RCT1100 \u2013 en inhalerbar mRNA-behandling rettet mot mutasjoner i DNAI1-genet. M\u00e5let er \u00e5 gjenopprette normal flimmerh\u00e5rfunksjon i luftveiene.<\/p>\n<p dir=\"auto\"><strong>Andre temaer<\/strong><\/p>\n<p><span style=\"text-decoration: underline;\">Ern\u00e6ring: <\/span>Selv om det finnes lite PCD-spesifikk forskning, viser studier p\u00e5 astma og KOLS at sunt kosthold kan redusere betennelse, styrke immunforsvaret og opprettholde muskelstyrke. Vitamin D er spesielt viktig, mens bearbeidet kj\u00f8tt og prosessert mat b\u00f8r begrenses.<\/p>\n<p><span style=\"text-decoration: underline;\">Overgang fra barn til voksen:<\/span> En god og planlagt overgang er avgj\u00f8rende. Mange land bruker programmet \u00abReady Steady Go\u00bb for \u00e5 hjelpe ungdommer med kronisk sykdom. Temaer som fertilitet, jobb, seksualitet og rus b\u00f8r tas opp tidlig og \u00e5pent.<\/p>\n<p dir=\"auto\">Konferansen avsluttet med\u00a0 pasienthistorier som ga verdifull innsikt og mulighet for sp\u00f8rsm\u00e5l. Det ble tydelig hvor viktig det er med tidlig diagnose, kompetanse og st\u00f8tte \u2013 b\u00e5de medisinsk og menneskelig.<\/p>\n<p><span>Du kan ogs\u00e5 se programmet under, eller ved \u00e5 klikke <a href=\"https:\/\/cfnorge.no\/wp-content\/uploads\/2025\/10\/PCD-Patients-Conference-2025_Agenda.pdf\">HER<\/a>\u00a0<\/span><\/p>\n<p>&nbsp;<\/p>\n<p>[\/et_pb_text][\/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_image src=&raquo;https:\/\/cfnorge.no\/wp-content\/uploads\/2025\/10\/pcd-konferanse-2025-.jpg&raquo; title_text=&raquo;pcd konferanse 2025&#8243; _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]<\/p>","protected":false},"excerpt":{"rendered":"<p>Konferansen er organisert i samarbeid mellom pasienter, familier, forskere og klinikere, og byr p\u00e5 oppdaterte foredrag om diagnosen, behandling og dagligliv med PCD. Her f\u00e5r man se hva som r\u00f8rer seg i det internasjonale PCD-milj\u00f8et i m\u00f8te med andre pasienter, forskere og p\u00e5r\u00f8rende. Registrering er \u00e5pen n\u00e5 ->  sjekk BEAT-PCD sine nettsider for detaljer og p\u00e5melding.<\/p>","protected":false},"author":6,"featured_media":2433,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_et_pb_use_builder":"on","_et_pb_old_content":"","_et_gb_content_width":"","footnotes":""},"categories":[39],"tags":[],"class_list":["post-2432","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-nyheter"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v26.2 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>Oppdatering fra BEAT-PCD Pasientkonferanse 2025 - CF Norge<\/title>\n<meta name=\"description\" content=\"I slutten av november samlet fagfolk, forskere og pasienter seg til en viktig konferanse om prim\u00e6r cili\u00e6r dyskinesi (PCD).\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/cfnorge.no\/en\/beat-pcd-pasientkonferanse-2025\/\" \/>\n<meta property=\"og:locale\" content=\"en_GB\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Oppdatering fra BEAT-PCD Pasientkonferanse 2025 - 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