{"id":13274,"date":"2026-06-22T22:06:48","date_gmt":"2026-06-22T21:06:48","guid":{"rendered":"https:\/\/ring20researchsupport.co.uk\/?p=13274"},"modified":"2026-06-22T22:11:22","modified_gmt":"2026-06-22T21:11:22","slug":"meet-sarah-our-families-liaison-officer","status":"publish","type":"post","link":"https:\/\/ring20researchsupport.co.uk\/nb\/2026\/06\/meet-sarah-our-families-liaison-officer\/","title":{"rendered":"M\u00f8t Sarah, v\u00e5r familiekontakt"},"content":{"rendered":"<p>I begynnelsen av juni lanserte vi v\u00e5r <a href=\"https:\/\/ring20researchsupport.co.uk\/nb\/for-families\/flo_project\/\">Familiekontaktprosjekt<\/a>. Et prosjekt opprettet for \u00e5 gi passende st\u00f8tte og informasjon til familier som lever med ringkromosom 20-epilepsisyndrom over hele verden.<\/p>\n\n\n\n<p>I dag snakker vi med Sarah, prosjektets familiekontakt, for \u00e5 l\u00e6re mer om initiativet og hva hun h\u00e5per \u00e5 oppn\u00e5 i rollen sin.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\"><strong>Hva er din rolle hos Ring20 Research &amp; Support?<\/strong><\/h2>\n\n\n\n<p>Jeg er familiekontaktansvarlig hos Ring20 Research &amp; Support. Min rolle fokuserer p\u00e5 \u00e5 st\u00f8tte familier som lever med r(20) ved \u00e5 hjelpe dem med \u00e5 f\u00e5 tilgang til informasjon, st\u00f8tte og muligheter til \u00e5 komme i kontakt med andre som forst\u00e5r deres erfaringer. Daglig inneb\u00e6rer dette \u00e5 snakke med familier, organisere st\u00f8tteaktiviteter, samle tilbakemeldinger, st\u00f8tte arrangementer i lokalsamfunnet og s\u00f8rge for at familiens stemmer bidrar til \u00e5 forme veldedighetsorganisasjonens arbeid.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\"><strong>Hva er din bakgrunn, og hva trakk deg til Ring20s familiekontaktprosjekt?<\/strong><\/h2>\n\n\n\n<p>Min bakgrunn er i st\u00f8ttefokuserte roller, hvor jeg har jobbet tett med mennesker for \u00e5 hjelpe dem med \u00e5 navigere utfordringer, f\u00e5 tilgang til tjenester og f\u00f8le seg st\u00f8ttet. Det som trakk meg til Ring20 var muligheten til \u00e5 jobbe direkte med familier og bidra til et prosjekt som har potensial til \u00e5 gj\u00f8re en meningsfull forskjell i folks liv. Jeg ble spesielt tiltrukket av fellesskapsaspektet ved rollen og muligheten til \u00e5 hjelpe familier med \u00e5 f\u00f8le seg mindre alene.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\"><strong>Hvorfor er Familiekontaktprosjektet viktig for deg, og hva h\u00e5per du \u00e5 oppn\u00e5?<\/strong><\/h2>\n\n\n\n<p>Prosjektet er viktig for meg fordi alle familier fortjener \u00e5 f\u00f8le seg h\u00f8rt, st\u00f8ttet og tilknyttet. \u00c5 leve med en sjelden tilstand kan noen ganger f\u00f8les isolerende, og jeg h\u00e5per dette prosjektet vil bidra til \u00e5 styrke fellesskapsf\u00f8lelsen i Ring20. Jeg vil at familier skal vite at det alltid er noen de kan kontakte, og jeg h\u00e5per \u00e5 bidra til \u00e5 identifisere omr\u00e5der der det kan v\u00e6re behov for ytterligere st\u00f8tte, informasjon eller ressurser.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\"><strong>Tror du det finnes et udekket behov i Ring20-samfunnet? I s\u00e5 fall, hva er det, og hvordan f\u00f8ler du at dette prosjektet vil bidra til \u00e5 dekke det?<\/strong><\/h2>\n\n\n\n<p>Etter hvert som jeg begynner \u00e5 bli kjent med familier, er det et tema som allerede skiller seg ut, nemlig viktigheten av tilknytning og tilgang til st\u00f8tte fra mennesker som virkelig forst\u00e5r utfordringene ved \u00e5 leve med r(20). Hver families opplevelse er forskjellig, men det kan v\u00e6re felles utfordringer knyttet til tilgang til informasjon, tjenester og st\u00f8tte. Jeg h\u00e5per dette prosjektet vil hjelpe oss \u00e5 bedre forst\u00e5 disse behovene og sikre at familier har flere muligheter til \u00e5 knytte kontakter, dele erfaringer og p\u00e5virke den fremtidige retningen for st\u00f8tten som Ring20 tilbyr.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\"><strong>Hvorfor er det s\u00e5 viktig med p\u00e5virkningsarbeid i Ring20-fellesskapet?<\/strong><\/h2>\n\n\n\n<p>P\u00e5virkningsarbeid er utrolig viktig fordi sjeldne tilstander ofte ikke er godt forst\u00e5tt. P\u00e5virkningsarbeid bidrar til \u00e5 \u00f8ke bevisstheten, forbedre forst\u00e5elsen og sikre at behovene til enkeltpersoner og familier som er rammet av r(20) blir anerkjent. Det bidrar ogs\u00e5 til \u00e5 gi familier en stemme og kan bidra til forbedringer i st\u00f8tte, tjenester og forskning.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\"><strong>Til slutt, hvordan kan familier kontakte deg hvis de trenger st\u00f8tte?<\/strong><\/h2>\n\n\n\n<p>Familier er velkomne til \u00e5 kontakte meg pr. <a href=\"\/nb\/sarah@ring20researchsupport.co.uk\/\">e-post ved \u00e5 klikke her<\/a> eller gjennom Ring20s st\u00f8ttekanaler. Enten noen har et sp\u00f8rsm\u00e5l, \u00f8nsker \u00e5 diskutere en utfordring, leter etter informasjon eller bare \u00f8nsker \u00e5 komme i kontakt, er jeg alltid glad for \u00e5 h\u00f8re fra dem og vil gj\u00f8re mitt beste for \u00e5 hjelpe eller henvise dem til passende st\u00f8tte.<\/p>\n\n\n\n<p><strong>For \u00e5 l\u00e6re mer om v\u00e5rt familiekontaktprosjekt, vennligst klikk her. En stor takk til v\u00e5re bidragsytere, <a href=\"https:\/\/www.postcodelottery.co.uk\/\">Folkets postkodelotteri<\/a>, <a href=\"https:\/\/www.postcodetrust.org.uk\/\">Folkets postkodefond<\/a>, <a href=\"https:\/\/www.gillianstevensontrustuk.org\/home\">Gillys <\/a>og <a href=\"https:\/\/franklitchfieldtrust.co.uk\/\">Frank Litchfield General Charitable Trust<\/a> som har st\u00f8ttet arbeidet v\u00e5rt for \u00e5 gj\u00f8re dette prosjektet mulig.<\/strong><\/p>","protected":false},"excerpt":{"rendered":"<p>I juni lanserte vi v\u00e5rt familiekontaktprosjekt, som ble opprettet for \u00e5 gi st\u00f8tte og informasjon til familier som lever med Ring20-epilepsi. I dag snakker vi med Sarah, prosjektets familiekontaktansvarlig, for \u00e5 l\u00e6re mer om initiativet og arbeidet hennes.<\/p>","protected":false},"author":16,"featured_media":13131,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"site-sidebar-layout":"default","site-content-layout":"","ast-site-content-layout":"default","site-content-style":"default","site-sidebar-style":"default","ast-global-header-display":"","ast-banner-title-visibility":"","ast-main-header-display":"","ast-hfb-above-header-display":"","ast-hfb-below-header-display":"","ast-hfb-mobile-header-display":"","site-post-title":"","ast-breadcrumbs-content":"","ast-featured-img":"","footer-sml-layout":"","ast-disable-related-posts":"","theme-transparent-header-meta":"","adv-header-id-meta":"","stick-header-meta":"","header-above-stick-meta":"","header-main-stick-meta":"","header-below-stick-meta":"","astra-migrate-meta-layouts":"set","ast-page-background-enabled":"default","ast-page-background-meta":{"desktop":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"tablet":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"mobile":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""}},"ast-content-background-meta":{"desktop":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"tablet":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"mobile":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""}},"footnotes":""},"categories":[17],"tags":[],"class_list":["post-13274","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-blog"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.1 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Meet Sarah, our Families Liaison Officer - Ring20 Research and Support UK CIO<\/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:\/\/ring20researchsupport.co.uk\/nb\/2026\/06\/meet-sarah-our-families-liaison-officer\/\" \/>\n<meta property=\"og:locale\" content=\"nb_NO\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Meet Sarah, our Families Liaison Officer - Ring20 Research and Support UK CIO\" \/>\n<meta property=\"og:description\" content=\"In June, we launched our Families Liaison Project, which was created to provide support and information for families living with Ring20 epilepsy. 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