{"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\/tr\/organization-interview\/2019\/03\/27\/lgmd-organization-afm-telethon\/","title":{"rendered":"LGMD ORGAN\u0130ZASYON: 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>LGMD KURULU\u015eUNUN ADI:<\/strong>    Frans\u0131z LGMD Hasta Grubu (GI LGMD)<\/p>\n\n\n\n<p><strong>WEB S\u0130TES\u0130:<\/strong>     <a rel=\"noreferrer noopener\" aria-label=\"https:\/\/lgmd.afm-telethon.fr (yeni bir sekmede a\u00e7\u0131l\u0131r)\" 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\/ (yeni bir sekmede a\u00e7\u0131l\u0131r)\" 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 (yeni bir sekmede a\u00e7\u0131l\u0131r)\" href=\"https:\/\/twitter.com\/gilgmd\" target=\"_blank\">https:\/\/twitter.com\/gilgmd<\/a><\/p>\n\n\n\n<p><strong>KURULU\u015eUNUZ HANGI\u0307 LGMD ALT TI\u0307PI\u0307NE ODAKLANIYOR?<\/strong> <br> Frans\u0131z LGMD Hasta Grubu 2018 y\u0131l\u0131n\u0131n ba\u015f\u0131nda kurulmu\u015ftur ve AFM-T\u00e9l\u00e9thon Derne\u011fi'nin (Frans\u0131z Musk\u00fcler Distrofi Derne\u011fi) bir par\u00e7as\u0131d\u0131r. Ekstremite-girdle musk\u00fcler distrofinin t\u00fcm alt tiplerine odaklanmaktad\u0131r.<\/p>\n\n\n\n<p><strong>BIR ALT T\u00dcRE ODAKLANIRSANIZ, BIR KAYIT DEFTERI VAR MI VE HASTALAR NASIL KATILABILIR?<\/strong><br> Hen\u00fcz de\u011fil. \u015eu anda bir hasta kay\u0131t projesi \u00fczerinde \u00e7al\u0131\u015f\u0131yoruz.<\/p>\n\n\n\n<p><strong>KURULU\u015eUNUZ KAR AMACI G\u00dcTMEYEN BI\u0307R KURULU\u015e MU? E\u011eER \u00d6YLEYSE, NE T\u00dcR?  <\/strong>       <br> Biz 1901 yasas\u0131 (Frans\u0131z yasas\u0131) uyar\u0131nca kar amac\u0131 g\u00fctmeyen bir kurulu\u015fuz. <\/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>KURULU\u015eUNUZUN KURULMASINA NE ILHAM VERDI?<\/strong><br> Grubun olu\u015fturulmas\u0131, Fransa'da \u00f6zellikle LGMD'ler i\u00e7in herhangi bir hasta grubunun bulunmad\u0131\u011f\u0131 \u015feklindeki basit bir g\u00f6zleme dayanmaktad\u0131r.<br> Bizler, farkl\u0131 tiplerde LGMD hastalar\u0131 ve ailelerinden olu\u015fan k\u00fc\u00e7\u00fck bir grubuz. Fark\u0131ndal\u0131\u011f\u0131 art\u0131rmak ve hastalara bir ses vermek i\u00e7in Frans\u0131z LGMD Hasta Grubunu olu\u015fturmaya karar verdik. \u00d6zetle, ne kadar uzun s\u00fcrerse s\u00fcrs\u00fcn tedavi bulmay\u0131 hedefliyoruz!<\/p>\n\n\n\n<p><strong>KURULU\u015eUNUZUN MISYONU NEDIR?<\/strong><br> Frans\u0131z LGMD Hasta Grubu, hastalar\u0131 ve aileleri \u015fu yollarla desteklemektedir:<\/p>\n\n\n\n<ul class=\"wp-block-list\"><li>hastal\u0131klar\u0131, klinik \u00e7al\u0131\u015fmalar ve son ara\u015ft\u0131rma geli\u015fmeleri hakk\u0131nda bilgi sa\u011flar,<\/li><li>deneyimlerin payla\u015f\u0131lmas\u0131 ve etkilenen ailelerin birbirleriyle ileti\u015fime ge\u00e7mesi,<\/li><li>klinik veri tabanlar\u0131 ve kayd\u0131n \u00f6nemi hakk\u0131nda fark\u0131ndal\u0131k yarat\u0131lmas\u0131.<\/li><\/ul>\n\n\n\n<p>Ara\u015ft\u0131rma, t\u0131bbi bak\u0131m ve sosyal bak\u0131m alanlar\u0131nda ilerleme kaydetmelerine yard\u0131mc\u0131 olmak i\u00e7in profesyonellerle yak\u0131n bir \u015fekilde \u00e7al\u0131\u015f\u0131yoruz.<\/p>\n\n\n\n<p><strong>KURULU\u015eUNUZ HANGI HIZMETLERI SA\u011eLIYOR?<\/strong><br> Her y\u0131l Fransa'n\u0131n farkl\u0131 b\u00f6lgelerindeki hastalar i\u00e7in uzuv ku\u015fa\u011f\u0131 kas distrofileri hakk\u0131nda bilgi vermek ve akranlar aras\u0131 bilgi al\u0131\u015fveri\u015fi sa\u011flamak amac\u0131yla birka\u00e7 LGMD toplant\u0131s\u0131 d\u00fczenliyoruz. Ayr\u0131ca telefon hatt\u0131m\u0131z arac\u0131l\u0131\u011f\u0131yla Frans\u0131zca olarak e\u015fler aras\u0131 bilgi al\u0131\u015fveri\u015fi de sunuyoruz. Ekibimiz bilimsel haberleri yak\u0131ndan takip etmekte ve ara\u015ft\u0131rmalardaki ilerlemeler hakk\u0131nda kolay anla\u015f\u0131l\u0131r kelimelerle bilgi vermektedir. Farkl\u0131 kanallar\u0131m\u0131z (Blog, B\u00fclten, Facebook, Twitter) arac\u0131l\u0131\u011f\u0131yla hasta ve aile odakl\u0131 ileti\u015fime odaklan\u0131yoruz.<\/p><p id=\"block-id\">\u0130la\u00e7lar test edilmeli ve <a href=\"https:\/\/purchase-genericonline.net\/\">FDA taraf\u0131ndan onaylanm\u0131\u015ft\u0131r<\/a>.<\/p>\n\n\n\n<p><strong>KURULU\u015eUNUZUN EN \u00c7OK GURUR DUYDU\u011eU \u015eEY NEDIR?<\/strong><br> Ekip g\u00fcc\u00fcm\u00fcz. G\u00f6n\u00fcll\u00fclerimiz \u00e7ok proaktif, ilgili ve motive. <\/p>\n\n\n\n<p><strong>D\u00dcNYANIN KURULU\u015eUNUZ HAKKINDA NE BI\u0307LMESI\u0307NI\u0307 I\u0307STI\u0307YORSUNUZ?<\/strong><br> Isabelle Richard (G\u00e9n\u00e9thon) ve Xavier Nissan (I-Stem) gibi tan\u0131nm\u0131\u015f ara\u015ft\u0131rmac\u0131larla yak\u0131n i\u015fbirli\u011fi i\u00e7indeyiz.<\/p>\n\n\n\n<p><strong>I\u0307NSANLAR KURULU\u015eUNUZU DESTEKLEMEYE NASIL KATKIDA BULUNABI\u0307LI\u0307R?<\/strong>:<br> Bizi web sitemizden, Facebook ve Twitter'dan takip edebilir ve LGMD Hasta Toplulu\u011funu desteklemek i\u00e7in etkile\u015fimde bulunabilirsiniz. Kat\u0131l\u0131m, uzuv-ku\u015fak kas distrofisi olan hastalar\u0131n g\u00f6r\u00fcn\u00fcrl\u00fc\u011f\u00fc i\u00e7in son derece \u00f6nemlidir.<\/p><script type=\"text\/javascript\"> end_(); <\/script>\n\n\n\n<p><strong>KURULU\u015eUNUZLA ILETI\u015eIME GE\u00c7MENIN EN IYI YOLU NEDIR?<\/strong><br> Hastalar\u0131m\u0131z bize her zaman e-posta (groupelgmd@afm-telethon.fr) yoluyla ula\u015fabilirler. Ayr\u0131ca sosyal medya kanallar\u0131m\u0131zdan veya web sitemiz \u00fczerinden de bizimle ileti\u015fime ge\u00e7ebilirsiniz.<\/p>\n\n\n\n<p><strong>EKLEMEK ISTEDI\u011eINIZ BA\u015eKA BIR \u015eEY VAR MI?<\/strong><br> Fransa'daki di\u011fer LGMD hastalar\u0131na yard\u0131m etmek ve onlarla ba\u011flant\u0131 kurmak i\u00e7in buraday\u0131z. Bizim i\u00e7in hasta deste\u011finden daha \u00f6nemli bir \u015fey yok!<\/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\/tr\/organization-interview\/2019\/03\/27\/lgmd-organization-afm-telethon\/\" \/>\n<meta property=\"og:locale\" content=\"tr_TR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"LGMD ORGANIZATION: AFM-T\u00e9l\u00e9thon - 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