{"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\/cs\/2026\/06\/meet-sarah-our-families-liaison-officer\/","title":{"rendered":"Seznamte se se S\u00e1rou, na\u0161\u00ed koordin\u00e1torkou pro styk s rodinami"},"content":{"rendered":"<p>Za\u010d\u00e1tkem \u010dervna jsme spustili na\u0161i <a href=\"https:\/\/ring20researchsupport.co.uk\/cs\/for-families\/flo_project\/\">Projekt pro styk s rodinami<\/a>. Projekt vytvo\u0159en\u00fd s c\u00edlem poskytovat odpov\u00eddaj\u00edc\u00ed podporu a informace rodin\u00e1m \u017eij\u00edc\u00edm s epilepsi\u00ed s prstencov\u00fdm chromozomem 20 po cel\u00e9m sv\u011bt\u011b.<\/p>\n\n\n\n<p>Dnes si pov\u00edd\u00e1me se S\u00e1rou, sty\u010dnou pracovnic\u00ed pro rodiny v r\u00e1mci projektu, abychom se dozv\u011bd\u011bli v\u00edce o iniciativ\u011b a o tom, \u010deho by ve sv\u00e9 roli cht\u011bla dos\u00e1hnout.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\"><strong>Jak\u00e1 je va\u0161e role ve spole\u010dnosti Ring20 Research &amp; Support?<\/strong><\/h2>\n\n\n\n<p>Pracuji jako sty\u010dn\u00e1 osoba pro rodiny ve spole\u010dnosti Ring20 Research &amp; Support. Moje role se zam\u011b\u0159uje na podporu rodin \u017eij\u00edc\u00edch s R(20) a pom\u00e1h\u00e1 jim s p\u0159\u00edstupem k informac\u00edm, podpo\u0159e a mo\u017enostem spojit se s ostatn\u00edmi, kte\u0159\u00ed ch\u00e1pou jejich zku\u0161enosti. To zahrnuje ka\u017edodenn\u00ed rozhovory s rodinami, organizaci podp\u016frn\u00fdch aktivit, shroma\u017e\u010fov\u00e1n\u00ed zp\u011btn\u00e9 vazby, podporu komunitn\u00edch akc\u00ed a zaji\u0161t\u011bn\u00ed toho, aby hlasy rodin pom\u00e1haly utv\u00e1\u0159et pr\u00e1ci charitativn\u00ed organizace.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\"><strong>Jak\u00e9 je va\u0161e z\u00e1zem\u00ed a co v\u00e1s p\u0159ivedlo k projektu Ring20 pro styk s rodinami?<\/strong><\/h2>\n\n\n\n<p>Moje zku\u0161enosti jsou zam\u011b\u0159en\u00e9 na podporu, kde jsem \u00fazce spolupracovala s lidmi, abych jim pomohla zvl\u00e1dat v\u00fdzvy, vyu\u017e\u00edvat slu\u017eby a c\u00edtit se podporovan\u00ed. Na Ring20 m\u011b p\u0159il\u00e1kala mo\u017enost pracovat p\u0159\u00edmo s rodinami a p\u0159isp\u011bt k projektu, kter\u00fd m\u00e1 potenci\u00e1l smyslupln\u011b zm\u011bnit \u017eivoty lid\u00ed. Obzvl\u00e1\u0161t\u011b m\u011b p\u0159itahoval komunitn\u00ed aspekt t\u00e9to role a mo\u017enost pomoci rodin\u00e1m c\u00edtit se m\u00e9n\u011b osam\u011bl\u00e9.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\"><strong>Pro\u010d je pro v\u00e1s Projekt pro styk s rodinami d\u016fle\u017eit\u00fd a \u010deho chcete dos\u00e1hnout?<\/strong><\/h2>\n\n\n\n<p>Projekt je pro m\u011b d\u016fle\u017eit\u00fd, proto\u017ee ka\u017ed\u00e1 rodina si zaslou\u017e\u00ed c\u00edtit se sly\u0161et, podporovat a b\u00fdt propojena. \u017divot se vz\u00e1cn\u00fdm onemocn\u011bn\u00edm m\u016f\u017ee n\u011bkdy p\u016fsobit izola\u010dn\u011b a douf\u00e1m, \u017ee tento projekt pom\u016f\u017ee pos\u00edlit pocit soun\u00e1le\u017eitosti v r\u00e1mci Ring20. Chci, aby rodiny v\u011bd\u011bly, \u017ee v\u017edycky maj\u00ed n\u011bkoho, na koho se mohou obr\u00e1tit, a douf\u00e1m, \u017ee pom\u016f\u017eu identifikovat oblasti, kde mohou pot\u0159ebovat dal\u0161\u00ed podporu, informace nebo zdroje.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\"><strong>Mysl\u00edte si, \u017ee v komunit\u011b Ring20 existuje n\u011bjak\u00e1 nenapln\u011bn\u00e1 pot\u0159eba? Pokud ano, jak\u00e1 a jak si mysl\u00edte, \u017ee tento projekt pom\u016f\u017ee ji \u0159e\u0161it?<\/strong><\/h2>\n\n\n\n<p>Kdy\u017e za\u010d\u00edn\u00e1m pozn\u00e1vat rodiny, jedn\u00edm z t\u00e9mat, kter\u00e9 mi ji\u017e nyn\u00ed doch\u00e1z\u00ed, je d\u016fle\u017eitost propojen\u00ed a p\u0159\u00edstupu k podpo\u0159e od lid\u00ed, kte\u0159\u00ed skute\u010dn\u011b ch\u00e1pou v\u00fdzvy \u017eivota s r(20). Zku\u0161enosti ka\u017ed\u00e9 rodiny jsou jin\u00e9, ale mohou existovat spole\u010dn\u00e9 v\u00fdzvy t\u00fdkaj\u00edc\u00ed se p\u0159\u00edstupu k informac\u00edm, slu\u017eb\u00e1m a podpo\u0159e. Douf\u00e1m, \u017ee tento projekt n\u00e1m pom\u016f\u017ee l\u00e9pe porozum\u011bt t\u011bmto pot\u0159eb\u00e1m a zajist\u00ed, aby rodiny m\u011bly v\u00edce p\u0159\u00edle\u017eitost\u00ed k propojen\u00ed, sd\u00edlen\u00ed zku\u0161enost\u00ed a ovliv\u0148ov\u00e1n\u00ed budouc\u00edho sm\u011b\u0159ov\u00e1n\u00ed podpory poskytovan\u00e9 Ring20.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\"><strong>Pro\u010d je obhajoba v komunit\u011b Ring20 tak d\u016fle\u017eit\u00e1?<\/strong><\/h2>\n\n\n\n<p>Obhajoba je nesm\u00edrn\u011b d\u016fle\u017eit\u00e1, proto\u017ee vz\u00e1cn\u00e1 onemocn\u011bn\u00ed \u010dasto nejsou dob\u0159e pochopena. Obhajoba pom\u00e1h\u00e1 zvy\u0161ovat pov\u011bdom\u00ed, zlep\u0161ovat porozum\u011bn\u00ed a zajistit, aby byly uzn\u00e1ny pot\u0159eby jednotlivc\u016f a rodin posti\u017een\u00fdch r(20). Pom\u00e1h\u00e1 tak\u00e9 d\u00e1t rodin\u00e1m hlas a m\u016f\u017ee p\u0159isp\u011bt ke zlep\u0161en\u00ed podpory, slu\u017eeb a v\u00fdzkumu.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\"><strong>A kone\u010dn\u011b, jak se na v\u00e1s mohou rodiny obr\u00e1tit, pokud pot\u0159ebuj\u00ed podporu?<\/strong><\/h2>\n\n\n\n<p>Rodiny m\u011b mohou kontaktovat prost\u0159ednictv\u00edm <a href=\"\/cs\/sarah@ring20researchsupport.co.uk\/\">e-mail kliknut\u00edm sem<\/a> nebo prost\u0159ednictv\u00edm podp\u016frn\u00fdch kan\u00e1l\u016f Ring20. A\u0165 u\u017e m\u00e1 n\u011bkdo dotaz, chce si probrat n\u011bjak\u00fd probl\u00e9m, hled\u00e1 informace nebo se chce jednodu\u0161e spojit, v\u017edycky si ho r\u00e1d vyslechnu a ud\u011bl\u00e1m v\u0161e pro to, abych mu pomohl nebo ho nasm\u011broval k p\u0159\u00edslu\u0161n\u00e9 podpo\u0159e.<\/p>\n\n\n\n<p><strong>Chcete-li se dozv\u011bd\u011bt v\u00edce o na\u0161em projektu Spojen\u00ed s rodinami, klikn\u011bte pros\u00edm zde. Velk\u00e9 pod\u011bkov\u00e1n\u00ed na\u0161im sponzor\u016fm, <a href=\"https:\/\/www.postcodelottery.co.uk\/\">Lidov\u00e1 PS\u010c loterie<\/a>, <a href=\"https:\/\/www.postcodetrust.org.uk\/\">Lidov\u00e1 po\u0161tovn\u00ed d\u016fv\u011bra<\/a>, <a href=\"https:\/\/www.gillianstevensontrustuk.org\/home\">Gilly&#039;s <\/a>a <a href=\"https:\/\/franklitchfieldtrust.co.uk\/\">V\u0161eobecn\u00e1 charitativn\u00ed nadace Franka Litchfielda<\/a> kte\u0159\u00ed podpo\u0159ili na\u0161i pr\u00e1ci, aby tento projekt mohl b\u00fdt realizov\u00e1n.<\/strong><\/p>","protected":false},"excerpt":{"rendered":"<p>V \u010dervnu jsme spustili n\u00e1\u0161 projekt pro styk s rodinami, kter\u00fd byl vytvo\u0159en s c\u00edlem poskytovat podporu a informace rodin\u00e1m \u017eij\u00edc\u00edm s epilepsi\u00ed typu Ring20. Dnes si pov\u00edd\u00e1me se Sarah, koordin\u00e1torkou projektu pro styk s rodinami, abychom se o t\u00e9to iniciativ\u011b a jej\u00ed pr\u00e1ci dozv\u011bd\u011bli v\u00edce.<\/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\/cs\/2026\/06\/meet-sarah-our-families-liaison-officer\/\" \/>\n<meta property=\"og:locale\" content=\"cs_CZ\" \/>\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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