{"id":2615,"date":"2019-01-27T15:17:42","date_gmt":"2019-01-27T21:17:42","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=2615"},"modified":"2019-01-27T15:17:42","modified_gmt":"2019-01-27T21:17:42","slug":"conquistando-escalones","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pt\/organization-interview\/2019\/01\/27\/conquistando-escalones\/","title":{"rendered":"ORGANIZA\u00c7\u00c3O: Conquistando Escalones"},"content":{"rendered":"
\"\"<\/figure>\n\n\n\n

NOME DA ORGANIZA\u00c7\u00c3O<\/strong>: CONQUISTANDO ESCALONES<\/p>\n\n\n\n

S\u00cdTIO WEB:<\/strong>              www.conquistandoescalones.org<\/a><\/p>\n\n\n\n

FACEBOOK:        <\/strong> www.facebook.com\/conquistandoescalones<\/a><\/p>\n\n\n\n

TWITTER:             <\/strong>@AceDistrofia<\/a><\/p>\n\n\n\n

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

Concentramo-nos na Distrofia Muscular das Cinturas dos Membros tipo 1F (LGMD1F)  <\/strong><\/p>\n\n\n\n

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

Sim, cri\u00e1mos um registo de doentes e estes podem contactar n\u00f3s<\/g> enviando uma mensagem de correio eletr\u00f3nico para conquistandoescalones@gmail.com<\/a> <\/p>\n\n\n\n

A SUA ORGANIZA\u00c7\u00c3O N\u00c3O TEM FINS LUCRATIVOS? EM CASO AFIRMATIVO, DE QUE TIPO:         <\/strong><\/p>\n\n\n\n

Sim, estamos registados em\nEspanha e em It\u00e1lia. <\/p>\n\n\n\n

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

A Associa\u00e7\u00e3o foi\nA Associa\u00e7\u00e3o foi criada devido \u00e0 necessidade de divulgar a nossa doen\u00e7a e de\ne de encontrar os fundos necess\u00e1rios para efetuar a investiga\u00e7\u00e3o.\nFoi fundada por pessoas afectadas pela distrofia muscular da cintura escapular\n1F (LGMD-1F) em 2015, porque nesse ano foi descoberto que a\nmuta\u00e7\u00e3o no gene que causa a LGMD1F, torna os afectados imunes \u00e0 SIDA e\ntorna-os a porta de entrada para uma poss\u00edvel cura para esta pandemia global.<\/p>\n\n\n\n

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

A nossa miss\u00e3o \u00e9 sensibilizar para as doen\u00e7as raras e para a import\u00e2ncia de as estudar. Al\u00e9m disso, criamos uma base de dados de doentes LGMD1F para a investiga\u00e7\u00e3o cient\u00edfica que estamos a financiar. Colocamos em contacto os laborat\u00f3rios de investiga\u00e7\u00e3o que est\u00e3o a estudar a LGMD1F. Estamos constantemente a tentar angariar fundos para financiar a investiga\u00e7\u00e3o. Ajudem-nos a caminhar, ajudem-nos a viver! Juntos podemos faz\u00ea-lo. \u00a0<\/p>\n\n\n\n

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

Prestamos apoio a\ndoentes com LGMD1F e outros subtipos de LGMD e mantemos o Registo de Doentes LGMD1F.\nde doentes LGMD1F. Al\u00e9m disso, estamos constantemente em contacto\ncontacto com laborat\u00f3rios de investiga\u00e7\u00e3o. <\/p>\n\n\n\n

O nosso objetivo principal \u00e9\nna investiga\u00e7\u00e3o e desenvolvimento de tratamentos, e n\u00e3o nos servi\u00e7os prestados aos doentes.  <\/p>\n\n\n\n

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

 Em 3 anos, conseguimos financiar novos\nestudos de investiga\u00e7\u00e3o sobre LGMD1F, que anteriormente estavam parados. <\/strong><\/p>\n\n\n\n

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

Estamos a financiar muitas abordagens diferentes\nabordagens diferentes, incluindo o CRISPR e a reorienta\u00e7\u00e3o de medicamentos j\u00e1 existentes no mercado para\noutras doen\u00e7as. <\/p>\n\n\n\n

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

As pessoas podem ajudar\na angariar fundos para a investiga\u00e7\u00e3o organizando eventos, fazendo um donativo ou de\noutras formas (ver esta liga\u00e7\u00e3o para o nosso s\u00edtio Web\nhttp:\/\/www.conquistandoescalones.org\/web\/en\/how-to-help-us\/)<\/p>\n\n\n\n

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

As pessoas podem contactar-nos em\nconquistandoescalones@gmail.com ou podem tamb\u00e9m enviar-nos uma mensagem atrav\u00e9s do Facebook.\n<\/p>\n\n\n\n

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

\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\nSe tem um diagn\u00f3stico de LGMD1F, por favor contacte-nos!!!\n\n\n\n<\/p>","protected":false},"excerpt":{"rendered":"

NAME OF ORGANIZATION:          CONQUISTANDO ESCALONES WEBSITE:              www.conquistandoescalones.org FACEBOOK:        […]<\/p>","protected":false},"author":1,"featured_media":2614,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[94,101,95],"tags":[],"class_list":["post-2615","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-organization-interview","category-lgmd1f","category-organization"],"acf":[],"yoast_head":"\nORGANIZATION: Conquistando Escalones - 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\/01\/27\/conquistando-escalones\/\" \/>\n<meta property=\"og:locale\" content=\"pt_PT\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"ORGANIZATION: Conquistando Escalones - 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