{"id":9486,"date":"2022-03-06T15:37:21","date_gmt":"2022-03-06T15:37:21","guid":{"rendered":"https:\/\/ring20researchsupport.co.uk\/?p=9486"},"modified":"2023-02-10T08:54:50","modified_gmt":"2023-02-10T08:54:50","slug":"epicare_22_blog","status":"publish","type":"post","link":"https:\/\/ring20researchsupport.co.uk\/nb\/2022\/03\/epicare_22_blog\/","title":{"rendered":"Hva har EpiCARE gjort for r(20) syndrom?"},"content":{"rendered":"<div data-elementor-type=\"wp-post\" data-elementor-id=\"9486\" class=\"elementor elementor-9486\" data-elementor-post-type=\"post\">\n\t\t\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-61c0fd26 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"61c0fd26\" data-element_type=\"section\" data-e-type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-5154e456\" data-id=\"5154e456\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-3bd678fd elementor-widget elementor-widget-text-editor\" data-id=\"3bd678fd\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t\t\t\t\t\t<p>&quot;Vel, ganske mye faktisk ....&quot; sier Allison Watson administrerende direkt\u00f8r i Ring20 Research and Support UK CIO.<\/p><p>Allison er medleder for pasientens advocacy group (ePAG) for <a href=\"https:\/\/epi-care.eu\/\">EpiCARE \u2013 ERN for sjeldne og komplekse epilepsier<\/a>, s\u00e5 sammen med noen (sv\u00e6rt f\u00e5) kolleger representerer hun behovene til alle som er ber\u00f8rt av alle &#039;epilepsiene&#039; over hele Europa \u2013 det er litt av et ansvar!<\/p><p><img fetchpriority=\"high\" decoding=\"async\" class=\"aligncenter wp-image-9496 size-large\" src=\"https:\/\/ring20researchsupport.co.uk\/wp-content\/uploads\/2022\/03\/Introduction-to-EPAG-EpiCare-presentation-webinar-FINAL-3-1024x576.jpg\" alt=\"\" width=\"1024\" height=\"576\" srcset=\"https:\/\/ring20researchsupport.co.uk\/wp-content\/uploads\/2022\/03\/Introduction-to-EPAG-EpiCare-presentation-webinar-FINAL-3-1024x576.jpg 1024w, https:\/\/ring20researchsupport.co.uk\/wp-content\/uploads\/2022\/03\/Introduction-to-EPAG-EpiCare-presentation-webinar-FINAL-3-300x169.jpg 300w, https:\/\/ring20researchsupport.co.uk\/wp-content\/uploads\/2022\/03\/Introduction-to-EPAG-EpiCare-presentation-webinar-FINAL-3-768x432.jpg 768w, https:\/\/ring20researchsupport.co.uk\/wp-content\/uploads\/2022\/03\/Introduction-to-EPAG-EpiCare-presentation-webinar-FINAL-3-18x10.jpg 18w, https:\/\/ring20researchsupport.co.uk\/wp-content\/uploads\/2022\/03\/Introduction-to-EPAG-EpiCare-presentation-webinar-FINAL-3-600x338.jpg 600w, https:\/\/ring20researchsupport.co.uk\/wp-content\/uploads\/2022\/03\/Introduction-to-EPAG-EpiCare-presentation-webinar-FINAL-3.jpg 1280w\" sizes=\"(max-width: 1024px) 100vw, 1024px\" \/><\/p><p>EpiCARE ERN er en <strong>klinisk nettverk<\/strong> som betyr at den eksisterer <strong>\u00e5 forbedre pleie, behandling og behandling av pasienter med en sjelden og kompleks epilepsi<\/strong> \u2013 inkludert r(20) syndrom.<\/p><p>Rollen til ePAG-forkjemperne er \u00e5 bringe stemmen til pasientsamfunnet \u2013 enkeltindividene og familiene som er ber\u00f8rt \u2013 for \u00e5 informere om EpiCAREs aktiviteter fremover. Som ePAG tar vi til orde for hvilken informasjon og st\u00f8tte som &quot;mangler&quot; n\u00e5r det gjelder \u00e5 forbedre pasientbehandlingen. Allisons tilstedev\u00e6relse er sv\u00e6rt synlig n\u00e5r hun sitter i b\u00e5de EpiCARE Steering Committee og <a href=\"https:\/\/epi-care.eu\/epicares-research-council\/\">EpiCARE forskningsr\u00e5d<\/a> s\u00f8ker nye muligheter for forskning.<\/p><p>Allison har v\u00e6rt involvert i EpiCARE nesten siden starten for 5 \u00e5r siden. P\u00e5 den tiden har Allison v\u00e6rt medvirkende til \u00e5 oppn\u00e5 f\u00f8lgende endringer for r(20)-syndrom, og jobbet med forskjellige epileptologer over hele Europa:<\/p><p><img decoding=\"async\" class=\"alignleft wp-image-5350 size-medium\" src=\"https:\/\/ring20researchsupport.co.uk\/wp-content\/uploads\/2021\/04\/info-mockup-1-261x300.png\" alt=\"\" width=\"261\" height=\"300\" srcset=\"https:\/\/ring20researchsupport.co.uk\/wp-content\/uploads\/2021\/04\/info-mockup-1-261x300.png 261w, https:\/\/ring20researchsupport.co.uk\/wp-content\/uploads\/2021\/04\/info-mockup-1-10x12.png 10w, https:\/\/ring20researchsupport.co.uk\/wp-content\/uploads\/2021\/04\/info-mockup-1.png 300w\" sizes=\"(max-width: 261px) 100vw, 261px\" \/><\/p><ul><li>Oppretting av informasjon <a href=\"https:\/\/epi-care.eu\/wp-content\/uploads\/2021\/12\/Epicare-posters-Ring-20.pdf\">brosjyrer<\/a> \u2013 for b\u00e5de pasienter\/omsorgspersoner og for helsepersonell (med Prof Sameer Zuberi)<\/li><li>Opprettelse av en <a href=\"https:\/\/ring20researchsupport.co.uk\/nb\/patient-journey\/\">Pasientreise<\/a> \u2013 for \u00e5 illustrere de typiske trinnene som noen med r(20) m\u00f8ter gjennom livet<\/li><li>Bidro til en <a href=\"https:\/\/epi-care.eu\/wp-content\/uploads\/2020\/11\/EpiCARE-ePAG-Poster-for-ECRD-2020-Final.pdf\">abstrakt og plakat for ECRD<\/a> om &quot;Felles udekkede behov i pasientsamfunnet&quot; (med ePAG-forkjempere)<\/li><li>Oppdater til <a href=\"https:\/\/www.orpha.net\/consor\/www\/cgi-bin\/OC_Exp.php?lng=EN&amp;Expert=1444\">Orphanet<\/a> \u2013 det p\u00e5litelige nettstedet for helsepersonell for informasjon om sjeldne sykdommer (med Dr Valentina DE GIORGIS og Prof Rima Nabbout)<\/li><li>Produksjon av en <a href=\"https:\/\/epi-care.eu\/past-webinars\/?_sf_s=Ring%2020\">webinar<\/a> \u2013 \u00e5 utdanne helsepersonell i diagnose og behandling (med Prof Sameer Zuberi)<\/li><\/ul><p>Men arbeidet stopper ikke der. P\u00e5g\u00e5r og lanseres snart:<\/p><ul><li>En artikkel som skal publiseres i European Journal for Medical Genetics (med ePAG-forkjempere)<\/li><li><a href=\"https:\/\/epi-care.eu\/e-learning-modules\/\">E-l\u00e6ringsmoduler<\/a> \u2013 for oppl\u00e6ring av kommende epileptologer i tandem med ILAE (med Prof Sameer Zuberi)<\/li><\/ul><p>Hvis ikke det er nok, har Allison ogs\u00e5 nettopp sendt inn p\u00e5 nytt:<\/p><ul><li>En tilskuddss\u00f8knad for siste <a href=\"https:\/\/www.ejprarediseases.org\/our-actions-and-services\/funding-opportunities\/calls\/networking-support\/\">EJPRD NSS-anrop<\/a> \u2013 \u00e5 be om midler til en id\u00e9dugnad i slutten av 2022, Paris, for \u00e5 diskutere den n\u00e5v\u00e6rende forskningstilstanden i ring <span class='tooltipsall tooltipsincontent classtoolTips0'>Kromosomer<\/span> assosiert med epilepsi \u2013 for det meste r(20) og r(14) \u2013 og \u00e5 skape et nytt europeisk forskningsnettverk for \u00e5 jobbe sammen for \u00e5 drive vitenskapen fremover.<\/li><\/ul><p>Allison er aktivt involvert i ulike arbeidsgrupper (aktivitetsgruppene) til EpiCARE, inkludert \u00e5 gi sin faglige innsikt som forretningsanalytiker som en del av CORE-prosjektteamet for det nye <a href=\"https:\/\/epi-care.eu\/epicares-activities\/registry-project\/\">EpiCARE Pasientregister<\/a> som nettopp har blitt lansert. Hvis du g\u00e5r p\u00e5 klinikk p\u00e5 en av de <a href=\"https:\/\/epi-care.eu\/members-of-epicare\/\">50 EpiCARE-sentre over hele Europa<\/a>, ved ditt neste bes\u00f8k b\u00f8r du bli spurt om du vil samtykke til \u00e5 bli lagt til i det nye registeret. Vennligst si &#039;JA&#039;, da dette vil hjelpe oss \u00e5 begynne \u00e5 forst\u00e5 hvor mange mennesker som har r(20)-syndrom i Europa.<\/p><p>I de siste 2 \u00e5rene har Allison presentert sammen med andre ePAG-er p\u00e5 den \u00e5rlige <a href=\"https:\/\/epi-care.eu\/rome-workshop-building-the-epicare-2027-horizon\/\">sjelden epilepsikongress<\/a> i Roma og i fjor ble hun invitert til \u00e5 presentere hvordan &quot;bra ville se ut&quot; n\u00e5r det gjelder pasientsentrerte utfall (PCO), hvis det noen gang har v\u00e6rt en klinisk studie for personer med r(20)-syndrom.<\/p><p>Og bare til side, Allison er EURORDIS-frivillig og har fullf\u00f8rt et lederskapsprogram for sjeldne sykdommer; hun bidrar n\u00e5 til programmet for nye rekrutter. Hun deltar i ulike ePAG-tverrg\u00e5ende grupper som representerer behovene til alle sjeldne sykdommer og har blitt invitert til \u00e5 tale som en del av en paneldiskusjon p\u00e5 den kommende <a href=\"https:\/\/www.rare-diseases.eu\/\">Europeisk kongress for sjeldne sykdommer 2022<\/a> om &quot;Redusere ulikheter i utdanning, arbeid og selvstendig liv&quot; og trekker p\u00e5 hennes erfaringer med David og utfordringene mange st\u00e5r overfor.<\/p><p>Har nettopp kommet tilbake fra 5<sup>th<\/sup> EpiCARE \u00e5rsm\u00f8te i Lyon, Frankrike Allison har bygget noen solide arbeidsforhold med medisinske fagfolk over hele Europa. Og fordi de kjenner Allison, vet de om r(20) syndrom! Det var en glede \u00e5 f\u00e5 noen fantastiske tilbakemeldinger fra en av legene fra et nytt dansk senter, og h\u00f8re at webinaret om r(20) syndrom var &quot;Utmerket \u2013 faktisk, etter min mening en av de beste!&quot; og at som en konsekvens &quot;to nye personer har blitt diagnostisert med r(20) syndrom i Danmark og en annen ventet p\u00e5 testresultater for \u00e5 bekrefte&quot;. Dette er stort for pasientfellesskapet v\u00e5rt!<\/p><figure id=\"attachment_9511\" aria-describedby=\"caption-attachment-9511\" style=\"width: 1024px\" class=\"wp-caption aligncenter\"><img decoding=\"async\" class=\"wp-image-9511 size-large\" src=\"https:\/\/ring20researchsupport.co.uk\/wp-content\/uploads\/2022\/03\/EpiCARE-AGM-2022-1024x437.jpg\" alt=\"\" width=\"1024\" height=\"437\" srcset=\"https:\/\/ring20researchsupport.co.uk\/wp-content\/uploads\/2022\/03\/EpiCARE-AGM-2022-1024x437.jpg 1024w, https:\/\/ring20researchsupport.co.uk\/wp-content\/uploads\/2022\/03\/EpiCARE-AGM-2022-300x128.jpg 300w, https:\/\/ring20researchsupport.co.uk\/wp-content\/uploads\/2022\/03\/EpiCARE-AGM-2022-768x328.jpg 768w, https:\/\/ring20researchsupport.co.uk\/wp-content\/uploads\/2022\/03\/EpiCARE-AGM-2022-18x8.jpg 18w, https:\/\/ring20researchsupport.co.uk\/wp-content\/uploads\/2022\/03\/EpiCARE-AGM-2022-600x256.jpg 600w, https:\/\/ring20researchsupport.co.uk\/wp-content\/uploads\/2022\/03\/EpiCARE-AGM-2022.jpg 1348w\" sizes=\"(max-width: 1024px) 100vw, 1024px\" \/><figcaption id=\"caption-attachment-9511\" class=\"wp-caption-text\">EpiCARE \u00e5rsm\u00f8te, februar 2022<\/figcaption><\/figure><p>Allison melder seg frivillig i gjennomsnitt 1 dag per uke for EpiCARE-aktiviteter\/ePAG-administrasjon og EURORDIS-frivillighet \u2013 noen ganger mer. Kan du sette en pris p\u00e5 \u00e5 \u00f8ke bevisstheten om r(20) syndrom diagnostikk, behandling og omsorg i det medisinske brorskapet?<\/p><p>S\u00e5 hvis du ble spurt &quot;Hva har EpiCARE gjort for r(20) syndrom?&quot; og om Allison bruker mye tid p\u00e5 EpiCARE tilf\u00f8rer verdi for deg som medlemmer av veldedighetsorganisasjonen Ring20, hva vil du si?<\/p><p>Forfatter: Allison Watson, CEO Ring20 Research and Support UK CIO<\/p><p>mars 2022<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<\/div>\n\t\t<script type=\"text\/javascript\"> toolTips('.classtoolTips0','Chromosomes are long string-like structures that store all of our DNA. Each cell in the human body usually has 23 pairs of chromosomes (or 46 chromosomes in total).'); <\/script>","protected":false},"excerpt":{"rendered":"<p>Hvis du ble spurt &quot;Hva har EpiCARE gjort for r(20) syndrom?&quot; og om Allison bruker mye tid til EpiCARE gir verdi for deg som medlemmer av veldedigheten Ring20, hva vil du si?<\/p>","protected":false},"author":3,"featured_media":9500,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"site-sidebar-layout":"default","site-content-layout":"default","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":"default","adv-header-id-meta":"","stick-header-meta":"","header-above-stick-meta":"","header-main-stick-meta":"","header-below-stick-meta":"","astra-migrate-meta-layouts":"default","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-9486","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>What has EpiCARE done for r(20) syndrome? - 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\/2022\/03\/epicare_22_blog\/\" \/>\n<meta property=\"og:locale\" content=\"nb_NO\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"What has EpiCARE done for r(20) syndrome? - Ring20 Research and Support UK CIO\" \/>\n<meta property=\"og:description\" content=\"If you were asked \u201cWhat has EpiCARE done for r(20) syndrome?\u201d and whether Allison devoting significant time to EpiCARE adds value for you as members of Ring20 the charity, what would you say?\" \/>\n<meta property=\"og:url\" content=\"https:\/\/ring20researchsupport.co.uk\/nb\/2022\/03\/epicare_22_blog\/\" \/>\n<meta property=\"og:site_name\" content=\"Ring20 Research and Support UK CIO\" \/>\n<meta property=\"article:published_time\" content=\"2022-03-06T15:37:21+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2023-02-10T08:54:50+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/ring20researchsupport.co.uk\/wp-content\/uploads\/2022\/03\/ePAG-EpiCARE-new-logo.png\" \/>\n\t<meta property=\"og:image:width\" content=\"1200\" \/>\n\t<meta property=\"og:image:height\" content=\"1200\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/png\" \/>\n<meta name=\"author\" content=\"Alison\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"Skrevet av\" \/>\n\t<meta name=\"twitter:data1\" content=\"Alison\" \/>\n\t<meta name=\"twitter:label2\" content=\"Ansl. lesetid\" \/>\n\t<meta name=\"twitter:data2\" content=\"5 minutter\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\\\/\\\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\\\/\\\/ring20researchsupport.co.uk\\\/2022\\\/03\\\/epicare_22_blog\\\/#article\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/ring20researchsupport.co.uk\\\/2022\\\/03\\\/epicare_22_blog\\\/\"},\"author\":{\"name\":\"Alison\",\"@id\":\"https:\\\/\\\/ring20researchsupport.co.uk\\\/#\\\/schema\\\/person\\\/26816b7c1c7561b936befe247794dcac\"},\"headline\":\"What has EpiCARE done for r(20) syndrome?\",\"datePublished\":\"2022-03-06T15:37:21+00:00\",\"dateModified\":\"2023-02-10T08:54:50+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\\\/\\\/ring20researchsupport.co.uk\\\/2022\\\/03\\\/epicare_22_blog\\\/\"},\"wordCount\":817,\"publisher\":{\"@id\":\"https:\\\/\\\/ring20researchsupport.co.uk\\\/#organization\"},\"image\":{\"@id\":\"https:\\\/\\\/ring20researchsupport.co.uk\\\/2022\\\/03\\\/epicare_22_blog\\\/#primaryimage\"},\"thumbnailUrl\":\"https:\\\/\\\/ring20researchsupport.co.uk\\\/wp-content\\\/uploads\\\/2022\\\/03\\\/ePAG-EpiCARE-new-logo.png\",\"articleSection\":[\"Blog\"],\"inLanguage\":\"nb-NO\"},{\"@type\":\"WebPage\",\"@id\":\"https:\\\/\\\/ring20researchsupport.co.uk\\\/2022\\\/03\\\/epicare_22_blog\\\/\",\"url\":\"https:\\\/\\\/ring20researchsupport.co.uk\\\/2022\\\/03\\\/epicare_22_blog\\\/\",\"name\":\"What has EpiCARE done for r(20) syndrome? - Ring20 Research and Support UK CIO\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/ring20researchsupport.co.uk\\\/#website\"},\"primaryImageOfPage\":{\"@id\":\"https:\\\/\\\/ring20researchsupport.co.uk\\\/2022\\\/03\\\/epicare_22_blog\\\/#primaryimage\"},\"image\":{\"@id\":\"https:\\\/\\\/ring20researchsupport.co.uk\\\/2022\\\/03\\\/epicare_22_blog\\\/#primaryimage\"},\"thumbnailUrl\":\"https:\\\/\\\/ring20researchsupport.co.uk\\\/wp-content\\\/uploads\\\/2022\\\/03\\\/ePAG-EpiCARE-new-logo.png\",\"datePublished\":\"2022-03-06T15:37:21+00:00\",\"dateModified\":\"2023-02-10T08:54:50+00:00\",\"breadcrumb\":{\"@id\":\"https:\\\/\\\/ring20researchsupport.co.uk\\\/2022\\\/03\\\/epicare_22_blog\\\/#breadcrumb\"},\"inLanguage\":\"nb-NO\",\"potentialAction\":[{\"@type\":\"ReadAction\",\"target\":[\"https:\\\/\\\/ring20researchsupport.co.uk\\\/2022\\\/03\\\/epicare_22_blog\\\/\"]}]},{\"@type\":\"ImageObject\",\"inLanguage\":\"nb-NO\",\"@id\":\"https:\\\/\\\/ring20researchsupport.co.uk\\\/2022\\\/03\\\/epicare_22_blog\\\/#primaryimage\",\"url\":\"https:\\\/\\\/ring20researchsupport.co.uk\\\/wp-content\\\/uploads\\\/2022\\\/03\\\/ePAG-EpiCARE-new-logo.png\",\"contentUrl\":\"https:\\\/\\\/ring20researchsupport.co.uk\\\/wp-content\\\/uploads\\\/2022\\\/03\\\/ePAG-EpiCARE-new-logo.png\",\"width\":1200,\"height\":1200},{\"@type\":\"BreadcrumbList\",\"@id\":\"https:\\\/\\\/ring20researchsupport.co.uk\\\/2022\\\/03\\\/epicare_22_blog\\\/#breadcrumb\",\"itemListElement\":[{\"@type\":\"ListItem\",\"position\":1,\"name\":\"Home\",\"item\":\"https:\\\/\\\/ring20researchsupport.co.uk\\\/\"},{\"@type\":\"ListItem\",\"position\":2,\"name\":\"What has EpiCARE done for r(20) syndrome?\"}]},{\"@type\":\"WebSite\",\"@id\":\"https:\\\/\\\/ring20researchsupport.co.uk\\\/#website\",\"url\":\"https:\\\/\\\/ring20researchsupport.co.uk\\\/\",\"name\":\"Ring20 Research and Support UK CIO\",\"description\":\"Promoting research, education and continuous support to end undiagnosed and misdiagnosed Ring20 epilepsy\",\"publisher\":{\"@id\":\"https:\\\/\\\/ring20researchsupport.co.uk\\\/#organization\"},\"potentialAction\":[{\"@type\":\"SearchAction\",\"target\":{\"@type\":\"EntryPoint\",\"urlTemplate\":\"https:\\\/\\\/ring20researchsupport.co.uk\\\/?s={search_term_string}\"},\"query-input\":{\"@type\":\"PropertyValueSpecification\",\"valueRequired\":true,\"valueName\":\"search_term_string\"}}],\"inLanguage\":\"nb-NO\"},{\"@type\":\"Organization\",\"@id\":\"https:\\\/\\\/ring20researchsupport.co.uk\\\/#organization\",\"name\":\"Ring20 Research and Support CIO\",\"url\":\"https:\\\/\\\/ring20researchsupport.co.uk\\\/\",\"logo\":{\"@type\":\"ImageObject\",\"inLanguage\":\"nb-NO\",\"@id\":\"https:\\\/\\\/ring20researchsupport.co.uk\\\/#\\\/schema\\\/logo\\\/image\\\/\",\"url\":\"https:\\\/\\\/ring20researchsupport.co.uk\\\/wp-content\\\/uploads\\\/2021\\\/03\\\/Ring20_logo-high-resolution.jpg\",\"contentUrl\":\"https:\\\/\\\/ring20researchsupport.co.uk\\\/wp-content\\\/uploads\\\/2021\\\/03\\\/Ring20_logo-high-resolution.jpg\",\"width\":2357,\"height\":666,\"caption\":\"Ring20 Research and Support CIO\"},\"image\":{\"@id\":\"https:\\\/\\\/ring20researchsupport.co.uk\\\/#\\\/schema\\\/logo\\\/image\\\/\"}},{\"@type\":\"Person\",\"@id\":\"https:\\\/\\\/ring20researchsupport.co.uk\\\/#\\\/schema\\\/person\\\/26816b7c1c7561b936befe247794dcac\",\"name\":\"Alison\",\"image\":{\"@type\":\"ImageObject\",\"inLanguage\":\"nb-NO\",\"@id\":\"https:\\\/\\\/secure.gravatar.com\\\/avatar\\\/ade8313c3cbccc4f3dab7d41f7722b149cb238832a224128ffac0ebf12935eaa?s=96&d=mm&r=g\",\"url\":\"https:\\\/\\\/secure.gravatar.com\\\/avatar\\\/ade8313c3cbccc4f3dab7d41f7722b149cb238832a224128ffac0ebf12935eaa?s=96&d=mm&r=g\",\"contentUrl\":\"https:\\\/\\\/secure.gravatar.com\\\/avatar\\\/ade8313c3cbccc4f3dab7d41f7722b149cb238832a224128ffac0ebf12935eaa?s=96&d=mm&r=g\",\"caption\":\"Alison\"},\"url\":\"https:\\\/\\\/ring20researchsupport.co.uk\\\/nb\\\/author\\\/alison\\\/\"}]}<\/script>\n<!-- \/ Yoast SEO plugin. -->","yoast_head_json":{"title":"Hva har EpiCARE gjort for r(20) syndrom? - Ring20 Research and Support UK CIO","robots":{"index":"index","follow":"follow","max-snippet":"max-snippet:-1","max-image-preview":"max-image-preview:large","max-video-preview":"max-video-preview:-1"},"canonical":"https:\/\/ring20researchsupport.co.uk\/nb\/2022\/03\/epicare_22_blog\/","og_locale":"nb_NO","og_type":"article","og_title":"What has EpiCARE done for r(20) syndrome? - Ring20 Research and Support UK CIO","og_description":"If you were asked \u201cWhat has EpiCARE done for r(20) syndrome?\u201d and whether Allison devoting significant time to EpiCARE adds value for you as members of Ring20 the charity, what would you say?","og_url":"https:\/\/ring20researchsupport.co.uk\/nb\/2022\/03\/epicare_22_blog\/","og_site_name":"Ring20 Research and Support UK CIO","article_published_time":"2022-03-06T15:37:21+00:00","article_modified_time":"2023-02-10T08:54:50+00:00","og_image":[{"width":1200,"height":1200,"url":"https:\/\/ring20researchsupport.co.uk\/wp-content\/uploads\/2022\/03\/ePAG-EpiCARE-new-logo.png","type":"image\/png"}],"author":"Alison","twitter_card":"summary_large_image","twitter_misc":{"Skrevet av":"Alison","Ansl. lesetid":"5 minutter"},"schema":{"@context":"https:\/\/schema.org","@graph":[{"@type":"Article","@id":"https:\/\/ring20researchsupport.co.uk\/2022\/03\/epicare_22_blog\/#article","isPartOf":{"@id":"https:\/\/ring20researchsupport.co.uk\/2022\/03\/epicare_22_blog\/"},"author":{"name":"Alison","@id":"https:\/\/ring20researchsupport.co.uk\/#\/schema\/person\/26816b7c1c7561b936befe247794dcac"},"headline":"What has EpiCARE done for r(20) syndrome?","datePublished":"2022-03-06T15:37:21+00:00","dateModified":"2023-02-10T08:54:50+00:00","mainEntityOfPage":{"@id":"https:\/\/ring20researchsupport.co.uk\/2022\/03\/epicare_22_blog\/"},"wordCount":817,"publisher":{"@id":"https:\/\/ring20researchsupport.co.uk\/#organization"},"image":{"@id":"https:\/\/ring20researchsupport.co.uk\/2022\/03\/epicare_22_blog\/#primaryimage"},"thumbnailUrl":"https:\/\/ring20researchsupport.co.uk\/wp-content\/uploads\/2022\/03\/ePAG-EpiCARE-new-logo.png","articleSection":["Blog"],"inLanguage":"nb-NO"},{"@type":"WebPage","@id":"https:\/\/ring20researchsupport.co.uk\/2022\/03\/epicare_22_blog\/","url":"https:\/\/ring20researchsupport.co.uk\/2022\/03\/epicare_22_blog\/","name":"Hva har EpiCARE gjort for r(20) syndrom? - Ring20 Research and Support UK CIO","isPartOf":{"@id":"https:\/\/ring20researchsupport.co.uk\/#website"},"primaryImageOfPage":{"@id":"https:\/\/ring20researchsupport.co.uk\/2022\/03\/epicare_22_blog\/#primaryimage"},"image":{"@id":"https:\/\/ring20researchsupport.co.uk\/2022\/03\/epicare_22_blog\/#primaryimage"},"thumbnailUrl":"https:\/\/ring20researchsupport.co.uk\/wp-content\/uploads\/2022\/03\/ePAG-EpiCARE-new-logo.png","datePublished":"2022-03-06T15:37:21+00:00","dateModified":"2023-02-10T08:54:50+00:00","breadcrumb":{"@id":"https:\/\/ring20researchsupport.co.uk\/2022\/03\/epicare_22_blog\/#breadcrumb"},"inLanguage":"nb-NO","potentialAction":[{"@type":"ReadAction","target":["https:\/\/ring20researchsupport.co.uk\/2022\/03\/epicare_22_blog\/"]}]},{"@type":"ImageObject","inLanguage":"nb-NO","@id":"https:\/\/ring20researchsupport.co.uk\/2022\/03\/epicare_22_blog\/#primaryimage","url":"https:\/\/ring20researchsupport.co.uk\/wp-content\/uploads\/2022\/03\/ePAG-EpiCARE-new-logo.png","contentUrl":"https:\/\/ring20researchsupport.co.uk\/wp-content\/uploads\/2022\/03\/ePAG-EpiCARE-new-logo.png","width":1200,"height":1200},{"@type":"BreadcrumbList","@id":"https:\/\/ring20researchsupport.co.uk\/2022\/03\/epicare_22_blog\/#breadcrumb","itemListElement":[{"@type":"ListItem","position":1,"name":"Home","item":"https:\/\/ring20researchsupport.co.uk\/"},{"@type":"ListItem","position":2,"name":"What has EpiCARE done for r(20) syndrome?"}]},{"@type":"WebSite","@id":"https:\/\/ring20researchsupport.co.uk\/#website","url":"https:\/\/ring20researchsupport.co.uk\/","name":"Ring20 Research and Support UK CIO","description":"Fremme forskning, utdanning og kontinuerlig st\u00f8tte for \u00e5 f\u00e5 slutt p\u00e5 udiagnostisert og feildiagnostisert Ring20-epilepsi","publisher":{"@id":"https:\/\/ring20researchsupport.co.uk\/#organization"},"potentialAction":[{"@type":"SearchAction","target":{"@type":"EntryPoint","urlTemplate":"https:\/\/ring20researchsupport.co.uk\/?s={search_term_string}"},"query-input":{"@type":"PropertyValueSpecification","valueRequired":true,"valueName":"search_term_string"}}],"inLanguage":"nb-NO"},{"@type":"Organization","@id":"https:\/\/ring20researchsupport.co.uk\/#organization","name":"Ring20 Forskning og St\u00f8tte CIO","url":"https:\/\/ring20researchsupport.co.uk\/","logo":{"@type":"ImageObject","inLanguage":"nb-NO","@id":"https:\/\/ring20researchsupport.co.uk\/#\/schema\/logo\/image\/","url":"https:\/\/ring20researchsupport.co.uk\/wp-content\/uploads\/2021\/03\/Ring20_logo-high-resolution.jpg","contentUrl":"https:\/\/ring20researchsupport.co.uk\/wp-content\/uploads\/2021\/03\/Ring20_logo-high-resolution.jpg","width":2357,"height":666,"caption":"Ring20 Research and Support CIO"},"image":{"@id":"https:\/\/ring20researchsupport.co.uk\/#\/schema\/logo\/image\/"}},{"@type":"Person","@id":"https:\/\/ring20researchsupport.co.uk\/#\/schema\/person\/26816b7c1c7561b936befe247794dcac","name":"Alison","image":{"@type":"ImageObject","inLanguage":"nb-NO","@id":"https:\/\/secure.gravatar.com\/avatar\/ade8313c3cbccc4f3dab7d41f7722b149cb238832a224128ffac0ebf12935eaa?s=96&d=mm&r=g","url":"https:\/\/secure.gravatar.com\/avatar\/ade8313c3cbccc4f3dab7d41f7722b149cb238832a224128ffac0ebf12935eaa?s=96&d=mm&r=g","contentUrl":"https:\/\/secure.gravatar.com\/avatar\/ade8313c3cbccc4f3dab7d41f7722b149cb238832a224128ffac0ebf12935eaa?s=96&d=mm&r=g","caption":"Alison"},"url":"https:\/\/ring20researchsupport.co.uk\/nb\/author\/alison\/"}]}},"_links":{"self":[{"href":"https:\/\/ring20researchsupport.co.uk\/nb\/wp-json\/wp\/v2\/posts\/9486","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/ring20researchsupport.co.uk\/nb\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/ring20researchsupport.co.uk\/nb\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/ring20researchsupport.co.uk\/nb\/wp-json\/wp\/v2\/users\/3"}],"replies":[{"embeddable":true,"href":"https:\/\/ring20researchsupport.co.uk\/nb\/wp-json\/wp\/v2\/comments?post=9486"}],"version-history":[{"count":5,"href":"https:\/\/ring20researchsupport.co.uk\/nb\/wp-json\/wp\/v2\/posts\/9486\/revisions"}],"predecessor-version":[{"id":9523,"href":"https:\/\/ring20researchsupport.co.uk\/nb\/wp-json\/wp\/v2\/posts\/9486\/revisions\/9523"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/ring20researchsupport.co.uk\/nb\/wp-json\/wp\/v2\/media\/9500"}],"wp:attachment":[{"href":"https:\/\/ring20researchsupport.co.uk\/nb\/wp-json\/wp\/v2\/media?parent=9486"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/ring20researchsupport.co.uk\/nb\/wp-json\/wp\/v2\/categories?post=9486"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/ring20researchsupport.co.uk\/nb\/wp-json\/wp\/v2\/tags?post=9486"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}