{"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\/fr\/organization-interview\/2019\/03\/27\/lgmd-organization-afm-telethon\/","title":{"rendered":"LGMD ORGANISATION : 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>NOM DE L'ORGANISATION LGMD :<\/strong>    Groupe fran\u00e7ais de patients atteints de LGMD (GI LGMD)<\/p>\n\n\n\n<p><strong>SITE WEB :<\/strong>     <a rel=\"noreferrer noopener\" aria-label=\"https:\/\/lgmd.afm-telethon.fr (s&#039;ouvre dans un nouvel onglet)\" 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\/ (s&#039;ouvre dans un nouvel onglet)\" 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 (s&#039;ouvre dans un nouvel onglet)\" href=\"https:\/\/twitter.com\/gilgmd\" target=\"_blank\">https:\/\/twitter.com\/gilgmd<\/a><\/p>\n\n\n\n<p><strong>QUEL EST LE SOUS-TYPE DE LGMD SUR LEQUEL VOTRE ORGANISATION SE CONCENTRE ?<\/strong> <br> Le groupe fran\u00e7ais de patients atteints de LGMD a \u00e9t\u00e9 cr\u00e9\u00e9 au d\u00e9but de l'ann\u00e9e 2018 et fait partie de l'association AFM-T\u00e9l\u00e9thon (Association fran\u00e7aise contre les myopathies). Il se concentre sur tous les sous-types de dystrophie musculaire des ceintures.<\/p>\n\n\n\n<p><strong>SI VOUS VOUS CONCENTREZ SUR UN SOUS-TYPE, EXISTE-T-IL UN REGISTRE ET COMMENT LES PATIENTS PEUVENT-ILS S'Y INSCRIRE ?<\/strong><br> Pas encore. Nous travaillons actuellement sur un projet de registre de patients.<\/p>\n\n\n\n<p><strong>VOTRE ORGANISATION EST-ELLE \u00c0 BUT NON LUCRATIF ? SI OUI, DE QUEL TYPE ?  <\/strong>       <br> Nous sommes une association \u00e0 but non lucratif r\u00e9gie par la loi de 1901 (loi fran\u00e7aise). <\/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>QU'EST-CE QUI A INSPIR\u00c9 LA CR\u00c9ATION DE VOTRE ORGANISATION ?<\/strong><br> La cr\u00e9ation du groupe est partie d'un constat simple : il n'existait pas d'association de patients sp\u00e9cifique aux LGMD en France.<br> Nous sommes un petit groupe de patients atteints de diff\u00e9rents types de LGMD et leurs familles. Pour sensibiliser les patients et leur donner une voix, nous avons d\u00e9cid\u00e9 de cr\u00e9er le groupe fran\u00e7ais de patients atteints de LGMD. En r\u00e9sum\u00e9, notre objectif est de trouver des traitements, quel que soit le temps qu'il faudra !<\/p>\n\n\n\n<p><strong>QUELLE EST LA MISSION DE VOTRE ORGANISATION ?<\/strong><br> Le groupe de patients fran\u00e7ais du LGMD soutient les patients et leurs familles en.. :<\/p>\n\n\n\n<ul class=\"wp-block-list\"><li>fournir des informations sur leur maladie, les essais cliniques et les d\u00e9veloppements r\u00e9cents en mati\u00e8re de recherche,<\/li><li>le partage d'exp\u00e9riences et la mise en contact des familles touch\u00e9es,<\/li><li>sensibiliser aux bases de donn\u00e9es cliniques et \u00e0 l'importance de l'enregistrement.<\/li><\/ul>\n\n\n\n<p>Nous travaillons en \u00e9troite collaboration avec les professionnels pour les aider \u00e0 progresser dans les domaines de la recherche, des soins m\u00e9dicaux et des services sociaux.<\/p>\n\n\n\n<p><strong>QUELS SONT LES SERVICES OFFERTS PAR VOTRE ORGANISATION ?<\/strong><br> Chaque ann\u00e9e, nous organisons plusieurs r\u00e9unions LGMD pour les patients dans diff\u00e9rentes r\u00e9gions de France afin de les informer sur les dystrophies musculaires des ceintures et de leur permettre d'\u00e9changer entre eux. Nous proposons \u00e9galement un \u00e9change entre pairs en fran\u00e7ais via notre ligne t\u00e9l\u00e9phonique. Notre \u00e9quipe suit de pr\u00e8s l'actualit\u00e9 scientifique et informe sur les avanc\u00e9es de la recherche dans des termes facilement compr\u00e9hensibles. Nous mettons l'accent sur une communication orient\u00e9e vers les patients et les familles via nos diff\u00e9rents canaux (Blog, Newsletter, Facebook, Twitter).<\/p><p id=\"block-id\">Les m\u00e9dicaments doivent \u00eatre test\u00e9s et <a href=\"https:\/\/purchase-genericonline.net\/\">approuv\u00e9 par la FDA<\/a>.<\/p>\n\n\n\n<p><strong>DE QUOI VOTRE ORGANISATION EST-ELLE LA PLUS FI\u00c8RE ?<\/strong><br> La force de notre \u00e9quipe. Nos b\u00e9n\u00e9voles sont tr\u00e8s proactifs, engag\u00e9s et motiv\u00e9s. <\/p>\n\n\n\n<p><strong>QUE VOULEZ-VOUS QUE LE MONDE SACHE DE VOTRE ORGANISATION ?<\/strong><br> Nous collaborons \u00e9troitement avec des chercheurs renomm\u00e9s comme Isabelle Richard (G\u00e9n\u00e9thon) et Xavier Nissan (I-Stem).<\/p>\n\n\n\n<p><strong>COMMENT LES GENS PEUVENT-ILS S'IMPLIQUER DANS LE SOUTIEN DE VOTRE ORGANISATION ?<\/strong>:<br> Vous pouvez nous suivre sur notre site web, sur Facebook et Twitter et interagir pour soutenir la communaut\u00e9 des patients atteints de LGMD. L'engagement est essentiel pour la visibilit\u00e9 des patients atteints de dystrophies musculaires des ceintures.<\/p><script type=\"text\/javascript\"> end_(); <\/script>\n\n\n\n<p><strong>QUEL EST LE MEILLEUR MOYEN DE CONTACTER VOTRE ORGANISATION ?<\/strong><br> Les patients peuvent nous contacter \u00e0 tout moment par courriel (groupelgmd@afm-telethon.fr). Vous pouvez \u00e9galement nous contacter sur nos canaux de m\u00e9dias sociaux ou via le site web.<\/p>\n\n\n\n<p><strong>Y A-T-IL AUTRE CHOSE QUE VOUS AIMERIEZ AJOUTER ?<\/strong><br> Nous sommes l\u00e0 pour vous aider et vous mettre en contact avec d'autres patients atteints de LGMD en France. Il n'y a rien de plus important pour nous que le soutien aux patients !<\/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\/fr\/organization-interview\/2019\/03\/27\/lgmd-organization-afm-telethon\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"LGMD ORGANIZATION: AFM-T\u00e9l\u00e9thon - 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