{"id":3342,"date":"2019-12-27T14:48:00","date_gmt":"2019-12-27T20:48:00","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=3342"},"modified":"2021-02-19T18:34:05","modified_gmt":"2021-02-19T18:34:05","slug":"organization-cure-vcp","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/it\/organization-interview\/2019\/12\/27\/organization-cure-vcp\/","title":{"rendered":"ORGANIZZAZIONE: Cure VCP Disease, Inc."},"content":{"rendered":"
\n
\"\"<\/figure>\n<\/div>\n

NOME DELL'ORGANIZZAZIONE<\/strong>: Cure VCP Disease, Inc.<\/p>\n

SITO WEB:<\/strong>\u00a0 \u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 \u00a0https:\/\/www.curevcp.org<\/a><\/p>\n

FACEBOOK:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0<\/strong> https:\/\/www.facebook.com\/curevcpdisease\/<\/a><\/p>\n

TWITTER:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0<\/strong> @LostTexanInGA<\/p>\n

SU QUALE SOTTOTIPO DI LGMD SI CONCENTRA LA VOSTRA ORGANIZZAZIONE:\u00a0 <\/strong>\u00a0<\/p>\n

Le malattie VCP e in particolare la miopatia da inclusione associata alla malattia di Paget dell'osso e alla demenza frontotemporale (IBMPFD).\u00a0<\/p>\n

SE CI SI CONCENTRA SU UN SOTTOTIPO, ESISTE UN REGISTRO E COME POSSONO ISCRIVERSI I PAZIENTI?<\/strong><\/p>\n

https:\/\/www.curevcp.org\/patient-registry<\/a><\/p>\n

La vostra organizzazione \u00e8 una Non-Profit? Se s\u00ec, di che tipo:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0<\/strong><\/p>\n

\u00a0 S\u00ec, siamo un'organizzazione pubblica senza scopo di lucro 501(c)(3).<\/p>\n

COSA HA ISPIRATO LA CREAZIONE DELLA VOSTRA ORGANIZZAZIONE<\/strong>:<\/p>\n

\u00a0Non esisteva un'organizzazione formale per organizzare e sensibilizzare i pazienti e i ricercatori sulle malattie VCP. Io stessa sono una paziente e ho perso mia madre a causa della malattia e ho sentito che non potevo restare inattiva ad aspettare e sperare che accadesse qualcosa nella comunit\u00e0 della ricerca. Come popolazione di pazienti, dovevamo partecipare attivamente per ottenere risultati positivi, ma soprattutto per identificare la popolazione di pazienti.\u00a0<\/p>\n

QUAL \u00c8 LA MISSIONE DELLA VOSTRA ORGANIZZAZIONE:<\/strong><\/p>\n

Cure VCP Disease, Inc. \u00e8 stata costituita per promuovere le iniziative volte a curare le malattie correlate alle mutazioni del gene Valosin Containing Protein. Tra queste vi \u00e8 la malattia Inclusion Body Myopathy associated with Paget's disease of bone and Frontotemporal Dementia (IBMPFD). Il nostro obiettivo \u00e8 quello di fornire un'educazione e una sensibilizzazione globale sulle malattie VCP a medici, ricercatori, investitori, pazienti, assistenti e al pubblico in generale.<\/p>\n

QUALI SERVIZI FORNISCE LA VOSTRA ORGANIZZAZIONE:<\/strong><\/p>\n

\u00a0Manteniamo un registro globale dei pazienti affetti dalla malattia VCP. Forniamo speranza e istruzione alla nostra popolazione di pazienti attraverso conferenze, newsletter via e-mail, risorse online e webinar.<\/p>\n

DI COSA \u00c8 PI\u00d9 ORGOGLIOSA LA VOSTRA ORGANIZZAZIONE:<\/strong><\/p>\n

\u00a0Abbiamo iniziato a gennaio 2018 e ad aprile 2019 abbiamo condotto la conferenza inaugurale sulla malattia VCP per pazienti e caregiver. Erano presenti circa 60 pazienti, caregiver e ricercatori. Tutte le sessioni registrate sono disponibili sul nostro canale YouTube Cure VCP Disease.<\/p>\n

COSA VOLETE CHE IL MONDO SAPPIA DELLA VOSTRA ORGANIZZAZIONE?<\/strong>:<\/p>\n

\u00a0Molti dei nostri pazienti ricevono una diagnosi errata di LGMD o di miosite da inclusione. Il viaggio verso una diagnosi corretta pu\u00f2 essere stressante per molti pazienti affetti da malattie neuromuscolari. Il nostro obiettivo \u00e8 collaborare con tutte le organizzazioni neuromuscolari dell'adulto per promuovere la consapevolezza, l'educazione e le migliori pratiche. Tutti noi affrontiamo molte delle stesse sfide a causa delle nostre malattie e, sebbene la scienza delle nostre malattie possa essere diversa, dobbiamo essere tutti coinvolti in questa situazione.<\/p>\n

COME SI PU\u00d2 PARTECIPARE AL SOSTEGNO DELLA VOSTRA ORGANIZZAZIONE:<\/strong><\/p>\n

\u00a0Stiamo cercando di creare un programma di Ambasciatori per raggiungere i pazienti, gli assistenti e la comunit\u00e0 scientifica. Non conosciamo la prevalenza delle malattie VCP e l'identificazione di un maggior numero di pazienti \u00e8 fondamentale per comprendere l'impatto globale.<\/p>\n

QUAL \u00c8 IL MODO MIGLIORE PER CONTATTARE LA VOSTRA ORGANIZZAZIONE:<\/strong><\/p>\n

Sito web, gruppo Facebook o e-mail<\/p>\n

C'\u00c8 QUALCOS'ALTRO CHE VORREBBE AGGIUNGERE?<\/strong><\/p>\n

\u00a0La domanda chiave per distinguere tra la malattia di VCP e forse una mutazione LGMD \u00e8 la questione ereditaria: \"Gli altri membri della famiglia presentano debolezza muscolare, malattie ossee e\/o demenza?\". La malattia di VCP \u00e8 autosomica dominante e nella maggior parte dei casi passa attraverso le famiglie e pu\u00f2 presentarsi con sintomi diversi. Mia madre, mia zia e due zii (4 su 6 fratelli) avevano\/hanno la malattia di VCP. Poich\u00e9 sono un portatore della mutazione, \u00e8 possibile che la mia prole sia affetta dalla malattia al 50%. Il gene VCP \u00e8 ora incluso nella maggior parte dei test genetici delle malattie neuromuscolari.<\/p>\n<\/div><\/div><\/div><\/div><\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":1,"featured_media":4384,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[94,95],"tags":[],"class_list":["post-3342","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-organization-interview","category-organization"],"acf":[],"yoast_head":"\nORGANIZATION: Cure VCP Disease, Inc. - LGMD Awareness Foundation<\/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:\/\/www.lgmd-info.org\/it\/organization-interview\/2019\/12\/27\/organization-cure-vcp\/\" \/>\n<meta property=\"og:locale\" content=\"it_IT\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"ORGANIZATION: Cure VCP Disease, Inc. - 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