{"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\/pt\/organization-interview\/2019\/12\/27\/organization-cure-vcp\/","title":{"rendered":"ORGANIZA\u00c7\u00c3O: Cure VCP Disease, Inc."},"content":{"rendered":"
\n
\"\"<\/figure>\n<\/div>\n

NOME DA ORGANIZA\u00c7\u00c3O<\/strong>: Cure VCP Disease, Inc.<\/p>\n

S\u00cdTIO 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

EM QUE SUBTIPO DE LGMD SE CONCENTRA A SUA ORGANIZA\u00c7\u00c3O:\u00a0 <\/strong>\u00a0<\/p>\n

Doen\u00e7as VCP e, especificamente, Miopatia de corpos de inclus\u00e3o associada \u00e0 doen\u00e7a de Paget dos ossos e \u00e0 dem\u00eancia frontotemporal (IBMPFD).\u00a0<\/p>\n

SE NOS CONCENTRARMOS NUM SUBTIPO, EXISTE UM REGISTO E COMO PODEM OS DOENTES ADERIR?<\/strong><\/p>\n

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

A sua organiza\u00e7\u00e3o \u00e9 uma organiza\u00e7\u00e3o sem fins lucrativos? Em caso afirmativo, de que tipo:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0<\/strong><\/p>\n

\u00a0 Sim, somos uma organiza\u00e7\u00e3o p\u00fablica sem fins lucrativos 501(c)(3)<\/p>\n

O QUE INSPIROU A CRIA\u00c7\u00c3O DA SUA ORGANIZA\u00c7\u00c3O<\/strong>:<\/p>\n

\u00a0N\u00e3o existia nenhuma organiza\u00e7\u00e3o formal para organizar e dar a conhecer as doen\u00e7as do VCP aos doentes e investigadores. Eu pr\u00f3pria sou uma doente que perdeu a minha m\u00e3e devido \u00e0 doen\u00e7a e senti que n\u00e3o podia ficar parada \u00e0 espera que as coisas acontecessem na comunidade de investiga\u00e7\u00e3o. Enquanto popula\u00e7\u00e3o de doentes, precis\u00e1vamos de ser participantes activos para obter resultados positivos, mas, mais importante ainda, para identificar a popula\u00e7\u00e3o de doentes.\u00a0<\/p>\n

QUAL \u00c9 A MISS\u00c3O DA SUA ORGANIZA\u00c7\u00c3O:<\/strong><\/p>\n

A Cure VCP Disease, Inc. foi constitu\u00edda com o objetivo de promover esfor\u00e7os para curar doen\u00e7as relacionadas com muta\u00e7\u00f5es no gene da prote\u00edna que cont\u00e9m valosina. Isto inclui a doen\u00e7a Miopatia de corpos de inclus\u00e3o associada \u00e0 doen\u00e7a de Paget dos ossos e \u00e0 dem\u00eancia frontotemporal (IBMPFD). O nosso objetivo \u00e9 proporcionar educa\u00e7\u00e3o e sensibiliza\u00e7\u00e3o globais para as doen\u00e7as VCP a m\u00e9dicos, investigadores, investidores, doentes, prestadores de cuidados e ao p\u00fablico em geral.<\/p>\n

QUE SERVI\u00c7OS PRESTA A SUA ORGANIZA\u00c7\u00c3O:<\/strong><\/p>\n

\u00a0Mantemos um registo global de doentes com a doen\u00e7a VCP. Proporcionamos esperan\u00e7a e educa\u00e7\u00e3o \u00e0 nossa popula\u00e7\u00e3o de doentes atrav\u00e9s de confer\u00eancias, boletins informativos por correio eletr\u00f3nico, recursos online e webinars.<\/p>\n

DE QUE \u00c9 QUE A SUA ORGANIZA\u00c7\u00c3O MAIS SE ORGULHA:<\/strong><\/p>\n

\u00a0Come\u00e7\u00e1mos em janeiro de 2018 e, em abril de 2019, realiz\u00e1mos a confer\u00eancia inaugural de doentes e prestadores de cuidados da doen\u00e7a VCP. Estiveram presentes cerca de 60 doentes, prestadores de cuidados e investigadores. Todas as sess\u00f5es gravadas est\u00e3o dispon\u00edveis no nosso canal Cure VCP Disease no YouTube.<\/p>\n

O QUE QUER QUE O MUNDO SAIBA SOBRE A SUA ORGANIZA\u00c7\u00c3O<\/strong>:<\/p>\n

\u00a0Muitos dos nossos doentes s\u00e3o incorretamente diagnosticados como LGMD ou miosite de corpos de inclus\u00e3o. A jornada para um diagn\u00f3stico correto pode ser stressante para muitos doentes com doen\u00e7as neuromusculares. O nosso objetivo \u00e9 estabelecer parcerias com todas as organiza\u00e7\u00f5es neuromusculares de in\u00edcio na idade adulta para promover a sensibiliza\u00e7\u00e3o, a educa\u00e7\u00e3o e as melhores pr\u00e1ticas. Todos n\u00f3s enfrentamos muitos dos mesmos desafios devido \u00e0s nossas doen\u00e7as e, embora a ci\u00eancia das nossas doen\u00e7as possa ser diferente, temos de estar todos juntos nisto.<\/p>\n

COMO \u00c9 QUE AS PESSOAS SE PODEM ENVOLVER NO APOIO \u00c0 SUA ORGANIZA\u00c7\u00c3O:<\/strong><\/p>\n

\u00a0Estamos a tentar criar um programa de embaixadores para chegar aos doentes, aos prestadores de cuidados e \u00e0 comunidade cient\u00edfica. N\u00e3o conhecemos a preval\u00eancia das doen\u00e7as VCP e a identifica\u00e7\u00e3o de mais doentes \u00e9 fundamental para compreender o seu impacto global.<\/p>\n

QUAL \u00c9 A MELHOR FORMA DE CONTACTAR A SUA ORGANIZA\u00c7\u00c3O:<\/strong><\/p>\n

S\u00edtio Web, grupo do Facebook ou correio eletr\u00f3nico<\/p>\n

H\u00c1 MAIS ALGUMA COISA QUE GOSTARIA DE ACRESCENTAR?<\/strong><\/p>\n

\u00a0A quest\u00e3o-chave para diferenciar entre a doen\u00e7a VCP e talvez uma muta\u00e7\u00e3o LGMD \u00e9 a quest\u00e3o heredit\u00e1ria: \"Os outros membros da fam\u00edlia apresentam fraqueza muscular, doen\u00e7a \u00f3ssea e\/ou dem\u00eancia?\" A doen\u00e7a VCP \u00e9 autoss\u00f3mica dominante e, na maioria das vezes, \u00e9 transmitida atrav\u00e9s das fam\u00edlias e pode apresentar sintomas diferentes. A minha m\u00e3e, a minha tia e os meus dois tios (4 de 6 irm\u00e3os) tinham\/tem a doen\u00e7a VCP. Uma vez que sou portadora da muta\u00e7\u00e3o, \u00e9 50\/50 que a minha descend\u00eancia possa ser afetada. O gene VCP est\u00e1 agora inclu\u00eddo na maioria dos pain\u00e9is de testes gen\u00e9ticos de doen\u00e7as neuromusculares.<\/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\/pt\/organization-interview\/2019\/12\/27\/organization-cure-vcp\/\" \/>\n<meta property=\"og:locale\" content=\"pt_PT\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"ORGANIZATION: Cure VCP Disease, Inc. - 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