{"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\/fr\/2026\/06\/meet-sarah-our-families-liaison-officer\/","title":{"rendered":"Voici Sarah, notre agente de liaison avec les familles"},"content":{"rendered":"<p>D\u00e9but juin, nous avons lanc\u00e9 notre <a href=\"https:\/\/ring20researchsupport.co.uk\/fr\/for-families\/flo_project\/\">Projet de liaison avec les familles<\/a>. Un projet cr\u00e9\u00e9 pour apporter un soutien et des informations adapt\u00e9s aux familles vivant avec le syndrome d&#039;\u00e9pilepsie li\u00e9 au chromosome 20 en anneau \u00e0 travers le monde.<\/p>\n\n\n\n<p>Aujourd&#039;hui, nous nous entretenons avec Sarah, l&#039;agente de liaison avec les familles du projet, afin d&#039;en savoir plus sur cette initiative et sur ce qu&#039;elle esp\u00e8re accomplir dans son r\u00f4le.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\"><strong>Quel est votre r\u00f4le chez Ring20 Research &amp; Support ?<\/strong><\/h2>\n\n\n\n<p>Je suis charg\u00e9e de liaison avec les familles chez Ring20 Research &amp; Support. Mon r\u00f4le consiste \u00e0 soutenir les familles vivant avec le syndrome de Ring20 en les aidant \u00e0 acc\u00e9der \u00e0 l&#039;information, au soutien et aux occasions de rencontrer d&#039;autres personnes qui comprennent leur v\u00e9cu. Au quotidien, cela implique de discuter avec les familles, d&#039;organiser des activit\u00e9s de soutien, de recueillir leurs commentaires, de soutenir les \u00e9v\u00e9nements communautaires et de veiller \u00e0 ce que leurs avis contribuent \u00e0 fa\u00e7onner le travail de l&#039;association.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\"><strong>Quel est votre parcours et qu&#039;est-ce qui vous a attir\u00e9 dans le projet de liaison avec les familles de Ring20\u00a0?<\/strong><\/h2>\n\n\n\n<p>Mon exp\u00e9rience professionnelle est ax\u00e9e sur l&#039;accompagnement, o\u00f9 j&#039;ai travaill\u00e9 en \u00e9troite collaboration avec des personnes pour les aider \u00e0 surmonter les difficult\u00e9s, \u00e0 acc\u00e9der aux services et \u00e0 se sentir soutenues. Ce qui m&#039;a attir\u00e9e chez Ring20, c&#039;est l&#039;opportunit\u00e9 de travailler directement avec les familles et de contribuer \u00e0 un projet susceptible d&#039;am\u00e9liorer concr\u00e8tement leur quotidien. J&#039;ai \u00e9t\u00e9 particuli\u00e8rement s\u00e9duite par la dimension communautaire de ce r\u00f4le et par la possibilit\u00e9 d&#039;aider les familles \u00e0 se sentir moins isol\u00e9es.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\"><strong>Pourquoi le projet de liaison avec les familles est-il important pour vous, et qu&#039;esp\u00e9rez-vous r\u00e9aliser\u00a0?<\/strong><\/h2>\n\n\n\n<p>Ce projet me tient \u00e0 c\u0153ur car chaque famille m\u00e9rite d&#039;\u00eatre \u00e9cout\u00e9e, soutenue et int\u00e9gr\u00e9e. Vivre avec une maladie rare peut parfois \u00eatre source d&#039;isolement, et j&#039;esp\u00e8re que ce projet contribuera \u00e0 renforcer le sentiment d&#039;appartenance \u00e0 la communaut\u00e9 Ring20. Je souhaite que les familles sachent qu&#039;elles peuvent toujours compter sur quelqu&#039;un, et j&#039;esp\u00e8re aider \u00e0 identifier les domaines o\u00f9 un soutien, des informations ou des ressources suppl\u00e9mentaires pourraient \u00eatre n\u00e9cessaires.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\"><strong>Pensez-vous qu&#039;il existe un besoin non satisfait au sein de la communaut\u00e9 Ring20\u00a0? Si oui, quel est-il et comment pensez-vous que ce projet contribuera \u00e0 y rem\u00e9dier\u00a0?<\/strong><\/h2>\n\n\n\n<p>Alors que je commence \u00e0 rencontrer les familles, un th\u00e8me se d\u00e9gage d\u00e9j\u00e0\u00a0: l\u2019importance du lien social et de l\u2019acc\u00e8s au soutien de personnes qui comprennent r\u00e9ellement les difficult\u00e9s li\u00e9es au syndrome de Ring20. Chaque famille vit une exp\u00e9rience diff\u00e9rente, mais elles peuvent partager des difficult\u00e9s communes concernant l\u2019acc\u00e8s \u00e0 l\u2019information, aux services et au soutien. J\u2019esp\u00e8re que ce projet nous permettra de mieux comprendre ces besoins et de garantir aux familles davantage d\u2019occasions d\u2019\u00e9changer, de partager leurs exp\u00e9riences et d\u2019influencer l\u2019orientation future du soutien offert par Ring20.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\"><strong>Pourquoi le plaidoyer est-il si important au sein de la communaut\u00e9 Ring20\u00a0?<\/strong><\/h2>\n\n\n\n<p>Le plaidoyer est essentiel car les maladies rares sont souvent mal comprises. Il permet de sensibiliser le public, d&#039;am\u00e9liorer la compr\u00e9hension de ces maladies et de garantir la prise en compte des besoins des personnes et des familles touch\u00e9es par le syndrome r(20). Il donne \u00e9galement la parole aux familles et peut contribuer \u00e0 l&#039;am\u00e9lioration du soutien, des services et de la recherche.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\"><strong>Enfin, comment les familles peuvent-elles vous contacter si elles ont besoin de soutien\u00a0?<\/strong><\/h2>\n\n\n\n<p>Les familles sont invit\u00e9es \u00e0 me contacter par <a href=\"\/fr\/sarah@ring20researchsupport.co.uk\/\">Envoyez un e-mail en cliquant ici<\/a> Vous pouvez \u00e9galement me contacter via les canaux d&#039;assistance de Ring20. Que vous ayez une question, souhaitiez discuter d&#039;un probl\u00e8me, rechercher des informations ou simplement \u00e9changer, je suis toujours ravi de vous r\u00e9pondre et ferai de mon mieux pour vous aider ou vous orienter vers le support appropri\u00e9.<\/p>\n\n\n\n<p><strong>Pour en savoir plus sur notre projet de liaison avec les familles, veuillez cliquer ici. Un grand merci \u00e0 nos bailleurs de fonds\u00a0!, <a href=\"https:\/\/www.postcodelottery.co.uk\/\">Loterie des codes postaux du peuple<\/a>, <a href=\"https:\/\/www.postcodetrust.org.uk\/\">People&#039;s Postcode Trust<\/a>, <a href=\"https:\/\/www.gillianstevensontrustuk.org\/home\">Chez Gilly <\/a>et <a href=\"https:\/\/franklitchfieldtrust.co.uk\/\">La Fondation caritative g\u00e9n\u00e9rale Frank Litchfield<\/a> qui ont soutenu notre travail, rendant ainsi ce projet possible.<\/strong><\/p>","protected":false},"excerpt":{"rendered":"<p>En juin, nous avons lanc\u00e9 notre Projet de liaison avec les familles, cr\u00e9\u00e9 pour apporter soutien et information aux familles touch\u00e9es par l&#039;\u00e9pilepsie de type Ring20. Aujourd&#039;hui, nous nous entretenons avec Sarah, charg\u00e9e de liaison avec les familles au sein de ce projet, afin d&#039;en savoir plus sur cette initiative et son travail.<\/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\/fr\/2026\/06\/meet-sarah-our-families-liaison-officer\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\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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