{"id":1712,"date":"2024-12-05T14:40:39","date_gmt":"2024-12-05T13:40:39","guid":{"rendered":"https:\/\/cfnorge.no\/?p=1712"},"modified":"2025-11-05T12:15:02","modified_gmt":"2025-11-05T11:15:02","slug":"brukerrepresentantsamling-med-nksd","status":"publish","type":"post","link":"https:\/\/cfnorge.no\/en\/brukerrepresentantsamling-med-nksd\/","title":{"rendered":"Brukerrepresentantsamling med NKSD"},"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_post_title meta=&raquo;off&raquo; featured_image=&raquo;off&raquo; _builder_version=&raquo;4.21.0&#8243; _module_preset=&raquo;default&raquo; title_font=&raquo;||||||||&raquo; title_text_color=&raquo;gcid-26e97d0d-b127-4ce1-b597-0df3fb01df24&#8243; title_font_size=&raquo;35px&raquo; global_colors_info=&raquo;{%22gcid-26e97d0d-b127-4ce1-b597-0df3fb01df24%22:%91%22title_text_color%22%93}&raquo;][\/et_pb_post_title][et_pb_gallery gallery_ids=&raquo;1721,1722,1716&#8243; show_title_and_caption=&raquo;off&raquo; _builder_version=&raquo;4.21.0&#8243; _module_preset=&raquo;default&raquo; global_colors_info=&raquo;{}&raquo;][\/et_pb_gallery][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; 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;]<\/p>\n<p>Den 29. november deltok Inger Karin, brukerrepresentant for Norsk Forening for Cystisk Fibrose (NFCF) og leder for Senterr\u00e5det ved Norsk Senter for Cystisk Fibrose (NSCF), p\u00e5 en nasjonal samling arrangert av Nasjonal Kompetansetjeneste for Sjeldne Diagnoser (NKSD). De samlet brukerrepresentanter og fagpersoner fra \u00e5tte av de ni kompetansesentrene under NKSD. M\u00e5let var \u00e5 dele erfaringer og diskutere omorganiseringen av Nasjonalt Senter for Sjeldne Diagnoser (NSSD), som trer i kraft 1. januar 2025.<\/p>\n<p>Senterr\u00e5det er et r\u00e5dgivende organ for ledelsen av NSCF, og best\u00e5r blant annet av flere representanter fra NFCF, slik som Inger Karin. Senterr\u00e5det har jobbet for at NSCFs tjenester skal v\u00e6re likeverdige og tilgjengelige for alle brukere, og har fulgt utviklingen innen politiske prioriteringer, forskning og kvalitetsregistre for CF og PCD. I tillegg har omorganiseringen av sjeldentjenesten og NKSD v\u00e6rt et sentralt tema.\u00a0<\/p>\n<p><strong>Omorganiseringen av sjeldentjenesten<\/strong><\/p>\n<p>Hovedm\u00e5let med omorganiseringen til NSSD er \u00e5 n\u00e5 flere pasienter og tilby likeverdige tjenester p\u00e5 tvers av regionene. Samtidig understrekes det at dagens behandlingstilbud for sjeldne diagnoser ikke skal svekkes. Dette er s\u00e6rlig viktig for sm\u00e5 pasientgrupper som CF- og PCD-pasienter, som er avhengige av spesialisert oppf\u00f8lging og tett kontakt med erfarne fagmilj\u00f8er.<\/p>\n<p>Knut Even Lindsj\u00f8rn fra Helse S\u00f8r-\u00d8st fremhevet fem viktige punkter relatert til omorganiseringen:<\/p>\n<ol>\n<li>Flere diagnoser vil bli inkludert under paraplyen for sjeldne diagnoser, slik at flere brukere f\u00e5r et godt tilbud.<\/li>\n<li>\u00d8kt kompetanse skal spres fra sentrene og deles med tjenesteytere i helseregionene.<\/li>\n<li>De som er forn\u00f8yde med sitt n\u00e5v\u00e6rende tilbud ved sentrene, skal ikke f\u00e5 et d\u00e5rligere tilbud.<\/li>\n<li>NSSD skal sentralisere det som er n\u00f8dvendig, og desentralisere det som er mulig.<\/li>\n<li>Fagnettverk skal knytte sammen hele Norge for \u00e5 sikre at alle f\u00e5r et likt tilbud.<\/li>\n<\/ol>\n<p><strong>V\u00e5re innspill\u00a0<\/strong><\/p>\n<p>P\u00e5 vegne av NFCF la Inger Karin vekt p\u00e5 viktigheten av \u00e5 bevare klinisk behandling ved Norsk senter for cystisk fibrose. Hun understreket at kompetansen som oppst\u00e5r gjennom direkte pasientkontakt er avgj\u00f8rende, ikke bare for pasientene, men ogs\u00e5 for \u00e5 bygge opp kunnskap som kan deles med spesialisthelsetjenesten over hele landet. Dette sikrer at alle pasienter, uavhengig av bosted, f\u00e5r tilgang til den beste behandlingen.<\/p>\n<p>&nbsp;<\/p>\n<p>[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section]<\/p>","protected":false},"excerpt":{"rendered":"<p>Den 29. november deltok Inger Karin, brukerrepresentant for Norsk Forening for Cystisk Fibrose (NFCF) og leder for Senterr\u00e5det ved Norsk Senter for Cystisk Fibrose (NSCF), p\u00e5 en nasjonal samling arrangert av Nasjonal Kompetansetjeneste for Sjeldne Diagnoser (NKSD). Samlingen samlet brukerrepresentanter og fagpersoner fra \u00e5tte av de ni kompetansesentrene under NKSD. M\u00e5let var \u00e5 dele erfaringer og diskutere omorganiseringen av Nasjonalt Senter for Sjeldne Diagnoser (NSSD), som trer i kraft 1. januar 2025.<\/p>","protected":false},"author":6,"featured_media":1718,"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-1712","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>Brukerrepresentantsamling med NKSD - CF Norge<\/title>\n<meta name=\"description\" content=\"Inger Karin, brukerrepresentant for NFCF deltok p\u00e5 en nasjonal samling arrangert av Nasjonal Kompetansetjeneste for Sjeldne Diagnoser (NKSD)\" \/>\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\/brukerrepresentantsamling-med-nksd\/\" \/>\n<meta property=\"og:locale\" content=\"en_GB\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Brukerrepresentantsamling med NKSD - 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