{"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\/it\/organization-interview\/2019\/03\/27\/lgmd-organization-afm-telethon\/","title":{"rendered":"ORGANIZZAZIONE LGMD: 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 DELL'ORGANIZZAZIONE LGMD:<\/strong>    Gruppo francese di pazienti LGMD (GI LGMD)<\/p>\n\n\n\n<p><strong>SITO WEB:<\/strong>     <a rel=\"noreferrer noopener\" aria-label=\"https:\/\/lgmd.afm-telethon.fr (si apre in una nuova scheda)\" 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\/ (si apre in una nuova scheda)\" 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 (si apre in una nuova scheda)\" href=\"https:\/\/twitter.com\/gilgmd\" target=\"_blank\">https:\/\/twitter.com\/gilgmd<\/a><\/p>\n\n\n\n<p><strong>SU QUALE SOTTOTIPO DI LGMD SI CONCENTRA LA VOSTRA ORGANIZZAZIONE?<\/strong> <br> Il Gruppo francese di pazienti LGMD \u00e8 stato creato all'inizio del 2018 e fa parte dell'Associazione AFM-T\u00e9l\u00e9thon (Associazione francese per la distrofia muscolare). Si concentra su tutti i sottotipi di distrofia muscolare degli arti.<\/p>\n\n\n\n<p><strong>SE CI SI CONCENTRA SU UN SOTTOTIPO, ESISTE UN REGISTRO E COME POSSONO ISCRIVERSI I PAZIENTI?<\/strong><br> Non ancora. Attualmente stiamo lavorando a un progetto di registro dei pazienti.<\/p>\n\n\n\n<p><strong>LA VOSTRA ORGANIZZAZIONE \u00c8 UNA NO-PROFIT? SE S\u00cc, DI CHE TIPO?  <\/strong>       <br> Siamo un'organizzazione senza scopo di lucro ai sensi della legge del 1901 (legge francese). <\/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>COSA HA ISPIRATO LA CREAZIONE DELLA VOSTRA ORGANIZZAZIONE?<\/strong><br> La creazione del gruppo si \u00e8 basata sulla semplice constatazione che in Francia non esisteva alcun gruppo di pazienti specifico per le LGMD.<br> Siamo un piccolo gruppo di pazienti con diversi tipi di LGMD e le loro famiglie. Per sensibilizzare l'opinione pubblica e dare voce ai pazienti, abbiamo deciso di creare il Gruppo francese di pazienti con LGMD. Riassumendo, il nostro obiettivo \u00e8 quello di trovare delle cure, non importa quanto tempo ci vorr\u00e0!<\/p>\n\n\n\n<p><strong>QUAL \u00c8 LA MISSIONE DELLA VOSTRA ORGANIZZAZIONE?<\/strong><br> Il Gruppo francese di pazienti LGMD sostiene i pazienti e le famiglie attraverso:<\/p>\n\n\n\n<ul class=\"wp-block-list\"><li>fornendo informazioni sulla loro malattia, sugli studi clinici e sui recenti sviluppi della ricerca,<\/li><li>condividere le esperienze e mettere in contatto le famiglie colpite,<\/li><li>sensibilizzazione sui database clinici e sull'importanza della registrazione.<\/li><\/ul>\n\n\n\n<p>Lavoriamo a stretto contatto con i professionisti, aiutandoli a compiere progressi nella ricerca, nelle cure mediche e nell'assistenza sociale.<\/p>\n\n\n\n<p><strong>QUALI SERVIZI FORNISCE LA VOSTRA ORGANIZZAZIONE?<\/strong><br> Ogni anno organizziamo diversi incontri sulla LGMD per i pazienti in diverse parti della Francia, per informare sulle distrofie muscolari del cinto arterioso e per fornire scambi tra pari. Offriamo anche uno scambio tra pari in francese attraverso la nostra hotline telefonica. Il nostro team osserva attentamente le notizie scientifiche e informa sui progressi della ricerca con parole facilmente comprensibili. Ci concentriamo sulla comunicazione orientata ai pazienti e alle famiglie attraverso i nostri diversi canali (blog, newsletter, Facebook, Twitter).<\/p><p id=\"block-id\">I farmaci devono essere testati e <a href=\"https:\/\/purchase-genericonline.net\/\">approvato dalla FDA<\/a>.<\/p>\n\n\n\n<p><strong>DI COSA \u00c8 PI\u00d9 ORGOGLIOSA LA VOSTRA ORGANIZZAZIONE?<\/strong><br> La forza della nostra squadra. I nostri volontari sono molto proattivi, impegnati e motivati. <\/p>\n\n\n\n<p><strong>COSA VOLETE CHE IL MONDO SAPPIA DELLA VOSTRA ORGANIZZAZIONE?<\/strong><br> Collaboriamo strettamente con ricercatori rinomati come Isabelle Richard (G\u00e9n\u00e9thon) e Xavier Nissan (I-Stem).<\/p>\n\n\n\n<p><strong>COME SI PU\u00d2 PARTECIPARE AL SOSTEGNO DELLA VOSTRA ORGANIZZAZIONE?<\/strong>:<br> Potete seguirci sul nostro sito web, su Facebook e Twitter e interagire per sostenere la comunit\u00e0 dei pazienti LGMD. L'impegno \u00e8 essenziale per la visibilit\u00e0 dei pazienti affetti da distrofie muscolari degli arti.<\/p><script type=\"text\/javascript\"> end_(); <\/script>\n\n\n\n<p><strong>QUAL \u00c8 IL MODO MIGLIORE PER CONTATTARE LA VOSTRA ORGANIZZAZIONE?<\/strong><br> I pazienti possono raggiungerci in qualsiasi momento via e-mail (groupelgmd@afm-telethon.fr). \u00c8 possibile contattarci anche sui nostri canali di social media o tramite il sito web.<\/p>\n\n\n\n<p><strong>C'\u00c8 QUALCOS'ALTRO CHE VORREBBE AGGIUNGERE?<\/strong><br> Siamo qui per aiutare e connetterci con altri pazienti affetti da LGMD in Francia. Per noi non c'\u00e8 niente di pi\u00f9 importante del sostegno ai pazienti!<\/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\/it\/organization-interview\/2019\/03\/27\/lgmd-organization-afm-telethon\/\" \/>\n<meta property=\"og:locale\" content=\"it_IT\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"LGMD ORGANIZATION: AFM-T\u00e9l\u00e9thon - 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