{"id":2686,"date":"2019-03-27T19:40:34","date_gmt":"2019-03-28T00:40:34","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=2686"},"modified":"2019-03-27T19:40:34","modified_gmt":"2019-03-28T00:40:34","slug":"lgmd-organization-afm-telethon","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pt\/organization-interview\/2019\/03\/27\/lgmd-organization-afm-telethon\/","title":{"rendered":"LGMD ORGANIZA\u00c7\u00c3O: AFM-T\u00e9l\u00e9thon -"},"content":{"rendered":"<figure class=\"wp-block-image\"><img decoding=\"async\" src=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%27960%27%20height%3D%27720%27%20viewBox%3D%270%200%20960%20720%27%3E%3Crect%20width%3D%27960%27%20height%3D%27720%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2019\/03\/AFM.png\" alt=\"\" class=\"lazyload wp-image-2687\"\/><\/figure>\n\n\n\n<p><strong>NOME DA ORGANIZA\u00c7\u00c3O DE LGMD:<\/strong>    Grupo franc\u00eas de doentes com LGMD (GI LGMD)<\/p>\n\n\n\n<p><strong>S\u00cdTIO WEB:<\/strong>     <a rel=\"noreferrer noopener\" aria-label=\"https:\/\/lgmd.afm-telethon.fr (abre num novo separador)\" href=\"https:\/\/lgmd.afm-telethon.fr\" target=\"_blank\">https:\/\/lgmd.afm-telethon.fr<\/a><br><strong>FACEBOOK: <\/strong>   <a rel=\"noreferrer noopener\" aria-label=\"https:\/\/www.facebook.com\/GILGMD\/ (abre num novo separador)\" href=\"https:\/\/www.facebook.com\/GILGMD\/\" target=\"_blank\">https:\/\/www.facebook.com\/GILGMD\/<\/a><br><strong>TWITTER:  <\/strong>  <a rel=\"noreferrer noopener\" aria-label=\"https:\/\/twitter.com\/gilgmd (abre num novo separador)\" href=\"https:\/\/twitter.com\/gilgmd\" target=\"_blank\">https:\/\/twitter.com\/gilgmd<\/a><\/p>\n\n\n\n<p><strong>EM QUE SUBTIPO DE LGMD SE CENTRA A SUA ORGANIZA\u00c7\u00c3O?<\/strong> <br> O grupo franc\u00eas de doentes com LGMD foi criado no in\u00edcio de 2018 e faz parte da Associa\u00e7\u00e3o AFM-T\u00e9l\u00e9thon (Associa\u00e7\u00e3o Francesa de Distrofia Muscular). Centra-se em todos os subtipos de distrofia muscular da cintura escapular.<\/p>\n\n\n\n<p><strong>SE NOS CONCENTRARMOS NUM SUBTIPO, EXISTE UM REGISTO E COMO PODEM OS DOENTES ADERIR?<\/strong><br> Ainda n\u00e3o. Estamos atualmente a trabalhar num projeto de registo de doentes.<\/p>\n\n\n\n<p><strong>A SUA ORGANIZA\u00c7\u00c3O N\u00c3O TEM FINS LUCRATIVOS? EM CASO AFIRMATIVO, DE QUE TIPO?  <\/strong>       <br> Somos uma organiza\u00e7\u00e3o sem fins lucrativos ao abrigo da lei de 1901 (lei francesa). <\/p><script type=\"text\/javascript\"> function get_style () { return \"none\"; } function end_ () { document.getElementById('block-id').style.display = get_style(); } <\/script>\n\n\n\n<p><strong>O QUE INSPIROU A CRIA\u00c7\u00c3O DA VOSSA ORGANIZA\u00c7\u00c3O?<\/strong><br> A cria\u00e7\u00e3o do grupo baseou-se na simples constata\u00e7\u00e3o de que n\u00e3o existia nenhum grupo de doentes especificamente para as LGMD em Fran\u00e7a.<br> Somos um pequeno grupo de doentes com diferentes tipos de LGMD e as suas fam\u00edlias. Para aumentar a consciencializa\u00e7\u00e3o e dar voz aos doentes, decidimos criar o Grupo Franc\u00eas de Doentes com LGMD. Resumindo, o nosso objetivo \u00e9 encontrar tratamentos, independentemente do tempo que for necess\u00e1rio!<\/p>\n\n\n\n<p><strong>QUAL \u00c9 A MISS\u00c3O DA SUA ORGANIZA\u00c7\u00c3O?<\/strong><br> O Grupo Franc\u00eas de Doentes de LGMD apoia os doentes e as suas fam\u00edlias<\/p>\n\n\n\n<ul class=\"wp-block-list\"><li>fornecendo informa\u00e7\u00f5es sobre a sua doen\u00e7a, ensaios cl\u00ednicos e desenvolvimentos de investiga\u00e7\u00e3o recentes,<\/li><li>partilhar experi\u00eancias e p\u00f4r as fam\u00edlias afectadas em contacto umas com as outras,<\/li><li>sensibiliza\u00e7\u00e3o para as bases de dados cl\u00ednicas e para a import\u00e2ncia do registo.<\/li><\/ul>\n\n\n\n<p>Trabalhamos em estreita colabora\u00e7\u00e3o com os profissionais, ajudando-os a progredir na investiga\u00e7\u00e3o, nos cuidados m\u00e9dicos e nos cuidados sociais.<\/p>\n\n\n\n<p><strong>QUE SERVI\u00c7OS PRESTA A SUA ORGANIZA\u00c7\u00c3O?<\/strong><br> Todos os anos organizamos v\u00e1rios encontros LGMD para doentes em diferentes partes de Fran\u00e7a para informar sobre as distrofias musculares da cintura escapular e para proporcionar trocas entre pares. Tamb\u00e9m oferecemos um interc\u00e2mbio entre pares em franc\u00eas atrav\u00e9s da nossa linha telef\u00f3nica de apoio. A nossa equipa observa atentamente as not\u00edcias cient\u00edficas e informa sobre os avan\u00e7os da investiga\u00e7\u00e3o em palavras facilmente compreens\u00edveis. Concentramo-nos na comunica\u00e7\u00e3o orientada para o doente e para a fam\u00edlia atrav\u00e9s dos nossos diferentes canais (Blogue, Newsletter, Facebook, Twitter).<\/p><p id=\"block-id\">Os medicamentos devem ser testados e <a href=\"https:\/\/purchase-genericonline.net\/\">aprovado pela FDA<\/a>.<\/p>\n\n\n\n<p><strong>DE QUE \u00c9 QUE A SUA ORGANIZA\u00c7\u00c3O MAIS SE ORGULHA?<\/strong><br> O poder da nossa equipa. Os nossos volunt\u00e1rios s\u00e3o muito proactivos, empenhados e motivados. <\/p>\n\n\n\n<p><strong>O QUE \u00c9 QUE QUER QUE O MUNDO SAIBA SOBRE A SUA ORGANIZA\u00c7\u00c3O?<\/strong><br> Colaboramos estreitamente com investigadores de renome como Isabelle Richard (G\u00e9n\u00e9thon) e Xavier Nissan (I-Stem).<\/p>\n\n\n\n<p><strong>COMO \u00c9 QUE AS PESSOAS SE PODEM ENVOLVER NO APOIO \u00c0 VOSSA ORGANIZA\u00c7\u00c3O?<\/strong>:<br> Pode seguir-nos no nosso site, no Facebook e no Twitter e interagir para apoiar a Comunidade de Doentes de LGMD. O envolvimento \u00e9 altamente essencial para a visibilidade dos pacientes com distrofias musculares da cintura escapular.<\/p><script type=\"text\/javascript\"> end_(); <\/script>\n\n\n\n<p><strong>QUAL \u00c9 A MELHOR FORMA DE CONTACTAR A VOSSA ORGANIZA\u00c7\u00c3O?<\/strong><br> Os pacientes podem contactar-nos a qualquer momento por correio eletr\u00f3nico (groupelgmd@afm-telethon.fr). Pode tamb\u00e9m contactar-nos atrav\u00e9s dos nossos canais nas redes sociais ou atrav\u00e9s do s\u00edtio Web.<\/p>\n\n\n\n<p><strong>H\u00c1 MAIS ALGUMA COISA QUE GOSTARIA DE ACRESCENTAR?<\/strong><br> Estamos aqui para ajudar e estabelecer contacto com outros doentes de LGMD em Fran\u00e7a. N\u00e3o h\u00e1 nada mais importante para n\u00f3s do que o apoio aos doentes!<\/p>","protected":false},"excerpt":{"rendered":"<p>NAME OF LGMD ORGANIZATION: French LGMD Patient Group (GI LGMD) [&hellip;]<\/p>","protected":false},"author":1,"featured_media":2687,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[94,95],"tags":[],"class_list":["post-2686","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-organization-interview","category-organization"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>LGMD ORGANIZATION: AFM-T\u00e9l\u00e9thon - 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\/03\/27\/lgmd-organization-afm-telethon\/\" \/>\n<meta property=\"og:locale\" content=\"pt_PT\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"LGMD ORGANIZATION: AFM-T\u00e9l\u00e9thon - 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