{"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\/it\/2026\/06\/meet-sarah-our-families-liaison-officer\/","title":{"rendered":"Vi presentiamo Sarah, la nostra responsabile dei rapporti con le famiglie."},"content":{"rendered":"

All'inizio di giugno abbiamo lanciato il nostro Progetto di collegamento con le famiglie<\/a>. Un progetto creato per fornire supporto e informazioni adeguate alle famiglie che convivono con la sindrome epilettica da cromosoma ad anello 20 in tutto il mondo.<\/p>\n\n\n\n

Oggi parleremo con Sarah, la responsabile dei rapporti con le famiglie del progetto, per saperne di pi\u00f9 sull'iniziativa e su ci\u00f2 che spera di realizzare nel suo ruolo.<\/p>\n\n\n\n

Qual \u00e8 il tuo ruolo in Ring20 Research & Support?<\/strong><\/h2>\n\n\n\n

Sono la responsabile del supporto alle famiglie presso Ring20 Research & Support. Il mio ruolo \u00e8 incentrato sul sostegno alle famiglie che convivono con la sindrome r(20), aiutandole ad accedere a informazioni, supporto e opportunit\u00e0 per entrare in contatto con altre persone che comprendono la loro esperienza. Quotidianamente, questo comporta parlare con le famiglie, organizzare attivit\u00e0 di supporto, raccogliere feedback, supportare eventi comunitari e garantire che le voci delle famiglie contribuiscano a plasmare il lavoro dell'organizzazione.<\/p>\n\n\n\n

Qual \u00e8 il tuo percorso professionale e cosa ti ha attratto del progetto di collegamento con le famiglie di Ring20?<\/strong><\/h2>\n\n\n\n

La mia esperienza pregressa si \u00e8 concentrata su ruoli di supporto, dove ho lavorato a stretto contatto con le persone per aiutarle ad affrontare le difficolt\u00e0, accedere ai servizi e sentirsi supportate. Ci\u00f2 che mi ha attratto di Ring20 \u00e8 stata l'opportunit\u00e0 di lavorare direttamente con le famiglie e contribuire a un progetto che ha il potenziale per fare una differenza significativa nella vita delle persone. Sono stata particolarmente attratta dall'aspetto comunitario del ruolo e dalla possibilit\u00e0 di aiutare le famiglie a sentirsi meno sole.<\/p>\n\n\n\n

Perch\u00e9 il Progetto di collegamento con le famiglie \u00e8 importante per te e cosa speri di ottenere?<\/strong><\/h2>\n\n\n\n

Questo progetto \u00e8 importante per me perch\u00e9 ogni famiglia merita di sentirsi ascoltata, supportata e connessa. Convivere con una malattia rara a volte pu\u00f2 far sentire isolati, e spero che questo progetto contribuisca a rafforzare il senso di comunit\u00e0 all'interno di Ring20. Voglio che le famiglie sappiano che c'\u00e8 sempre qualcuno a cui possono rivolgersi, e spero di poter individuare le aree in cui potrebbero essere necessari ulteriori supporti, informazioni o risorse.<\/p>\n\n\n\n

Ritenete che all'interno della community di Ring20 ci sia un'esigenza insoddisfatta? Se s\u00ec, qual \u00e8 e in che modo pensate che questo progetto contribuir\u00e0 a soddisfarla?<\/strong><\/h2>\n\n\n\n

Man mano che inizio a conoscere le famiglie, un tema che emerge con forza \u00e8 l'importanza della connessione e dell'accesso al supporto di persone che comprendono veramente le difficolt\u00e0 di convivere con la r(20). L'esperienza di ogni famiglia \u00e8 diversa, ma possono esserci difficolt\u00e0 comuni nell'accesso a informazioni, servizi e supporto. Spero che questo progetto ci aiuti a comprendere meglio queste esigenze e a garantire alle famiglie maggiori opportunit\u00e0 di connettersi, condividere esperienze e influenzare la direzione futura del supporto fornito da Ring20.<\/p>\n\n\n\n

Perch\u00e9 l'attivit\u00e0 di sensibilizzazione \u00e8 cos\u00ec importante all'interno della comunit\u00e0 Ring20?<\/strong><\/h2>\n\n\n\n

L'attivit\u00e0 di advocacy \u00e8 incredibilmente importante perch\u00e9 le malattie rare sono spesso poco comprese. L'advocacy contribuisce a sensibilizzare l'opinione pubblica, a migliorare la comprensione e a garantire che i bisogni delle persone e delle famiglie colpite da r(20) vengano riconosciuti. Aiuta inoltre a dare voce alle famiglie e pu\u00f2 contribuire a migliorare il supporto, i servizi e la ricerca.<\/p>\n\n\n\n

Infine, come possono le famiglie contattarvi se hanno bisogno di supporto?<\/strong><\/h2>\n\n\n\n

Le famiglie sono invitate a contattarmi tramite invia un'email cliccando qui<\/a> oppure tramite i canali di supporto di Ring20. Che si tratti di una domanda, di un problema da risolvere, di una richiesta di informazioni o semplicemente di un contatto, sono sempre felice di ricevere messaggi e far\u00f2 del mio meglio per aiutare o indirizzare la persona al supporto pi\u00f9 appropriato.<\/p>\n\n\n\n

Per saperne di pi\u00f9 sul nostro progetto di collegamento con le famiglie, clicca qui. Un sentito ringraziamento ai nostri finanziatori, Lotteria popolare dei codici postali<\/a>, Fiducia dei codici postali del popolo<\/a>, Gilly's <\/a>e Il Fondo di beneficenza generale Frank Litchfield<\/a> che hanno sostenuto il nostro lavoro, rendendo possibile questo progetto.<\/strong><\/p>","protected":false},"excerpt":{"rendered":"

A giugno abbiamo lanciato il nostro Progetto di Collegamento con le Famiglie, creato per fornire supporto e informazioni alle famiglie che convivono con l'epilessia Ring20. Oggi parliamo con Sarah, la responsabile del progetto per il collegamento con le famiglie, per saperne di pi\u00f9 sull'iniziativa e sul suo lavoro.<\/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":"\nMeet 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\/it\/2026\/06\/meet-sarah-our-families-liaison-officer\/\" \/>\n<meta property=\"og:locale\" content=\"it_IT\" \/>\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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