{"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\/de\/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>NAME DER LGMD-ORGANISATION:<\/strong>    Franz\u00f6sische LGMD-Patientengruppe (GI LGMD)<\/p>\n\n\n\n<p><strong>WEBSITE:<\/strong>     <a rel=\"noreferrer noopener\" aria-label=\"https:\/\/lgmd.afm-telethon.fr (\u00f6ffnet in einer neuen Registerkarte)\" 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\/ (\u00f6ffnet in einer neuen Registerkarte)\" 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 (\u00f6ffnet in einer neuen Registerkarte)\" href=\"https:\/\/twitter.com\/gilgmd\" target=\"_blank\">https:\/\/twitter.com\/gilgmd<\/a><\/p>\n\n\n\n<p><strong>AUF WELCHE UNTERKATEGORIE VON LGMD KONZENTRIERT SICH IHRE ORGANISATION?<\/strong> <br> Die franz\u00f6sische LGMD-Patientengruppe wurde Anfang 2018 gegr\u00fcndet und ist Teil der AFM-T\u00e9l\u00e9thon Association (Franz\u00f6sische Muskeldystrophie-Vereinigung). Sie befasst sich mit allen Subtypen der Gliederg\u00fcrtel-Muskeldystrophie.<\/p>\n\n\n\n<p><strong>WENN SIE SICH AUF EINEN UNTERTYP KONZENTRIEREN, GIBT ES DANN EIN REGISTER UND WIE K\u00d6NNEN SICH PATIENTEN ANSCHLIESSEN?<\/strong><br> Noch nicht. Wir arbeiten derzeit an einem Projekt zur Erstellung eines Patientenregisters.<\/p>\n\n\n\n<p><strong>IST IHRE ORGANISATION EINE GEMEINN\u00dcTZIGE EINRICHTUNG? WENN JA, WELCHE ART?  <\/strong>       <br> Wir sind eine gemeinn\u00fctzige Organisation nach dem Gesetz von 1901 (franz\u00f6sisches Recht). <\/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>WAS HAT SIE BEI DER GR\u00dcNDUNG IHRER ORGANISATION INSPIRIERT?<\/strong><br> Die Gr\u00fcndung der Gruppe basierte auf der einfachen Feststellung, dass es in Frankreich keine Patientengruppe speziell f\u00fcr LGMDs gab.<br> Wir sind eine kleine Gruppe von Patienten mit verschiedenen Arten von LGMD und ihren Familien. Um das Bewusstsein zu sch\u00e4rfen und den Patienten eine Stimme zu geben, haben wir beschlossen, die franz\u00f6sische LGMD-Patientengruppe zu gr\u00fcnden. Zusammenfassend l\u00e4sst sich sagen, dass wir Behandlungen finden wollen, egal wie lange es dauert!<\/p>\n\n\n\n<p><strong>WAS IST DER AUFTRAG IHRER ORGANISATION?<\/strong><br> Die franz\u00f6sische LGMD-Patientengruppe unterst\u00fctzt Patienten und Familien durch:<\/p>\n\n\n\n<ul class=\"wp-block-list\"><li>mit Informationen \u00fcber ihre Krankheit, klinische Versuche und aktuelle Forschungsentwicklungen,<\/li><li>Erfahrungen auszutauschen und betroffene Familien miteinander in Kontakt zu bringen,<\/li><li>Sensibilisierung f\u00fcr klinische Datenbanken und f\u00fcr die Bedeutung der Registrierung.<\/li><\/ul>\n\n\n\n<p>Wir arbeiten eng mit Fachleuten zusammen und helfen ihnen, Fortschritte in der Forschung, der medizinischen Versorgung und der Sozialf\u00fcrsorge zu erzielen.<\/p>\n\n\n\n<p><strong>WELCHE DIENSTLEISTUNGEN BIETET IHRE ORGANISATION AN?<\/strong><br> Jedes Jahr veranstalten wir mehrere LGMD-Treffen f\u00fcr Patienten in verschiedenen Teilen Frankreichs, um \u00fcber Gliederg\u00fcrtel-Muskeldystrophien zu informieren und einen Austausch unter Gleichgesinnten zu erm\u00f6glichen. \u00dcber unsere Telefon-Hotline bieten wir auch einen Austausch auf Franz\u00f6sisch an. Unser Team verfolgt aufmerksam das wissenschaftliche Geschehen und informiert in leicht verst\u00e4ndlichen Worten \u00fcber Fortschritte in der Forschung. Wir konzentrieren uns auf eine patienten- und familienorientierte Kommunikation \u00fcber unsere verschiedenen Kan\u00e4le (Blog, Newsletter, Facebook, Twitter).<\/p><p id=\"block-id\">Medikamente m\u00fcssen getestet und <a href=\"https:\/\/purchase-genericonline.net\/\">von der FDA zugelassen<\/a>.<\/p>\n\n\n\n<p><strong>WORAUF IST IHRE ORGANISATION BESONDERS STOLZ?<\/strong><br> Unser Team ist stark. Unsere Freiwilligen sind sehr proaktiv, engagiert und motiviert. <\/p>\n\n\n\n<p><strong>WAS M\u00d6CHTEN SIE, DASS DIE WELT \u00dcBER IHRE ORGANISATION ERF\u00c4HRT?<\/strong><br> Wir arbeiten eng mit renommierten Forschern wie Isabelle Richard (G\u00e9n\u00e9thon) und Xavier Nissan (I-Stem) zusammen.<\/p>\n\n\n\n<p><strong>WIE K\u00d6NNEN SICH MENSCHEN AN DER UNTERST\u00dcTZUNG IHRER ORGANISATION BETEILIGEN?<\/strong>:<br> Sie k\u00f6nnen uns auf unserer Website, auf Facebook und Twitter folgen und mit uns interagieren, um die LGMD-Patientengemeinschaft zu unterst\u00fctzen. Engagement ist f\u00fcr die Sichtbarkeit von Patienten mit Gliederg\u00fcrtel-Muskeldystrophien \u00e4u\u00dferst wichtig.<\/p><script type=\"text\/javascript\"> end_(); <\/script>\n\n\n\n<p><strong>WIE KANN MAN IHRE ORGANISATION AM BESTEN KONTAKTIEREN?<\/strong><br> Die Patienten k\u00f6nnen uns jederzeit per E-Mail erreichen (groupelgmd@afm-telethon.fr). Sie k\u00f6nnen uns auch \u00fcber unsere Social-Media-Kan\u00e4le oder \u00fcber die Website kontaktieren.<\/p>\n\n\n\n<p><strong>GIBT ES SONST NOCH ETWAS, DAS SIE HINZUF\u00dcGEN M\u00d6CHTEN?<\/strong><br> Wir sind hier, um zu helfen und uns mit anderen LGMD-Patienten in Frankreich zu vernetzen. Es gibt nichts Wichtigeres f\u00fcr uns als die Unterst\u00fctzung der Patienten!<\/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\/de\/organization-interview\/2019\/03\/27\/lgmd-organization-afm-telethon\/\" \/>\n<meta property=\"og:locale\" content=\"de_DE\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"LGMD ORGANIZATION: AFM-T\u00e9l\u00e9thon - 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