{"id":2210,"date":"2018-08-26T18:11:20","date_gmt":"2018-08-26T23:11:20","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=2210"},"modified":"2018-08-26T18:11:20","modified_gmt":"2018-08-26T23:11:20","slug":"lgmd2l-foundation","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/tr\/lgmd2l\/2018\/08\/26\/lgmd2l-foundation\/","title":{"rendered":"ORGAN\u0130ZASYON: LGMD2L Vakf\u0131"},"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\/2018\/08\/LGMD2L-Foundation.png\" alt=\"\" class=\"lazyload wp-image-2211\"\/><\/figure>\n\n\n<p><strong>KURULU\u015eUN ADI<\/strong>:   LGMD2L Vakf\u0131<\/p>\n<p><strong>WEB S\u0130TES\u0130:<\/strong>\u00a0 \u00a0 \u00a0<a href=\"http:\/\/LGMD2L-Foundation.org\">LGMD2L-Foundation.org<\/a><\/p>\n<p><strong>Facebook:\u00a0 \u00a0 <\/strong><a href=\"http:\/\/Https:\/www.facebook.com\/LGMD2L-Foundation-208147369909916\">Https:\/\/www.facebook.com\/LGMD2L-Foundation<\/a><\/p>\n<p><strong>Twitter:\u00a0 \u00a0 \u00a0 \u00a0 <\/strong>@LGMD2L<\/p>\n<p><strong>KURULU\u015eUNUZ HANGI\u0307 LGMD ALT TI\u0307PI\u0307NE ODAKLANIYOR:\u00a0 <\/strong><\/p>\n<p>Limb Girdle Muscular Dystrophy tip 2L'ye (LGMD2L) odaklan\u0131yoruz<\/p>\n<p><strong>BIR ALT T\u00dcRE ODAKLANIRSANIZ, BIR KAYIT DEFTERI VAR MI VE HASTALAR NASIL KATILABILIR? <\/strong><\/p>\n<p>Evet, LGMD2L i\u00e7in Hasta Kay\u0131t Defterine \u015fu adresteki web sitemiz \u00fczerinden eri\u015filebilir <a href=\"http:\/\/www.lgmd2l-foundation.org\/patient-registration\">www.lgmd2l-foundation.org\/patient-registration<\/a><\/p>\n<p><strong>Kurulu\u015funuz Kar Amac\u0131 G\u00fctmeyen bir kurulu\u015f mu? E\u011fer \u00f6yleyse, ne t\u00fcr:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong><\/p>\n<p>Evet, ABD merkezli 501 (c)(3) vergiden muaf kamu hay\u0131r kurumu.<\/p>\n<p><strong>KURULU\u015eUNUZUN KURULMASINA NE I\u0307LHAM VERDI\u0307?<\/strong>:<\/p>\n<p>\u00d6ncelikle, LGMD2L te\u015fhisi konan bireyler i\u00e7in, mevcut olduklar\u0131nda klinik ara\u015ft\u0131rmalara haz\u0131rl\u0131kl\u0131 olmak amac\u0131yla bir hasta kay\u0131t defteri geli\u015ftirme ihtiyac\u0131.<\/p>\n<p><strong>KURULU\u015eUNUZUN MISYONU NEDIR?\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong><\/p>\n<p>LGMD2L Vakf\u0131'n\u0131n amac\u0131, bu nadir hastal\u0131ktan etkilenen insanlar\u0131 bir araya getirmektir. Ayr\u0131ca, ba\u011flant\u0131 kurmak, tart\u0131\u015fmak ve nihayetinde LGMD2L \u00fcyelerinden olu\u015fan bir topluluk olu\u015fturmak i\u00e7in a\u00e7\u0131k bir forum sa\u011flamak. Hastal\u0131\u011f\u0131m\u0131z nadir g\u00f6r\u00fclmesine ve yeterince anla\u015f\u0131lamamas\u0131na ra\u011fmen, bu vakf\u0131 gelecekteki bilimsel ara\u015ft\u0131rmalar ve klinik deneyler i\u00e7in LGMD2L hastalar\u0131ndan olu\u015fan bir veri taban\u0131 olu\u015fturmak amac\u0131yla kurduk. De\u011fi\u015fimi sa\u011flaman\u0131n tek yolu, tedavi i\u00e7in \u00e7abalayanlar\u0131 bir araya getirmektir!<\/p>\n<p><strong>KURULU\u015eUNUZ HANGI HIZMETLERI SA\u011eLIYOR:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong><\/p>\n<p>Kay\u0131t, web sitesi ve sosyal medya arac\u0131l\u0131\u011f\u0131yla bilgi. Gerekti\u011finde destek ve di\u011fer toplum kaynaklar\u0131na ba\u011flant\u0131lar.<\/p>\n<p><strong>KURULU\u015eUNUZUN EN \u00c7OK GURUR DUYDU\u011eU \u015eEY NEDIR?\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong><\/p>\n<p>K\u00e2r amac\u0131 g\u00fctmeyen kurulu\u015f stat\u00fcm\u00fcz\u00fc almak ve kay\u0131t defteri ile web sitesini ba\u015flatmak.<\/p>\n<p><strong>D\u00fcnyan\u0131n KURULU\u015eUNUZ hakk\u0131nda ne bilmesini istersiniz?<\/strong>:<\/p>\n<p>Bu alanda harika ba\u011flant\u0131lar geli\u015ftiriyoruz ve klinik deneyler ba\u015flamaya haz\u0131r oldu\u011funda bize yard\u0131mc\u0131 olacak bir kay\u0131t defteri olu\u015fturmay\u0131 umuyoruz.<\/p>\n<p><strong>\u0130NSANLAR KURULU\u015eUNUZU DESTEKLEMEYE NASIL DAHIL OLABILIRLER?\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong><\/p>\n<p>Web sitemizde bizimle ileti\u015fime ge\u00e7mek ve nihayetinde vergiden d\u00fc\u015f\u00fclebilir ba\u011f\u0131\u015flar yapmak i\u00e7in gerekli bilgiler yer alacak ve etkinliklerde ve konferanslarda bilgilere ba\u011fl\u0131 kalmam\u0131z gerekecek.<\/p>\n<p><strong>KURULU\u015eUNUZLA ILETI\u015eIME GE\u00c7MENIN EN IYI YOLU NEDIR?\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong><\/p>\n<p>Web sitemizde e-posta adresimiz ve telefon numaram\u0131z bulunmaktad\u0131r. L\u00fctfen istedi\u011finiz zaman bize ula\u015f\u0131n. Bize her zaman Facebook veya Twitter \u00fczerinden de mesaj g\u00f6nderebilirsiniz.<\/p>\n<p><strong>EKLEMEK ISTEDI\u011eINIZ BA\u015eKA BIR \u015eEY VAR MI?\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong><\/p>\n<p>LGMD2L i\u00e7in tedavi ve iyile\u015ftirme \u00e7al\u0131\u015fmalar\u0131nda ba\u015far\u0131ya ula\u015fmay\u0131 d\u00f6rt g\u00f6zle bekliyoruz.<\/p>\n<p>\u00a0<\/p>\n<p>* * * Daha fazla \"LGMD Spotlight R\u00f6portaj\u0131\" okumak veya gelecek bir r\u00f6portajda yer almak i\u00e7in g\u00f6n\u00fcll\u00fc olmak i\u00e7in l\u00fctfen web sitemizi ziyaret edin\u00a0 <a href=\"https:\/\/www.lgmd-info.org\/tr\/spotlight-interviews\/\">https:\/\/www.lgmd-info.org\/spotlight-interviews<\/a><\/p>","protected":false},"excerpt":{"rendered":"<p>NAME OF ORGANIZATION:\u00a0 \u00a0LGMD2L Foundation WEBSITE:\u00a0 \u00a0 \u00a0LGMD2L-Foundation.org Facebook:\u00a0 \u00a0 [&hellip;]<\/p>","protected":false},"author":1,"featured_media":2211,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[94,49,95],"tags":[],"class_list":["post-2210","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-organization-interview","category-lgmd2l","category-organization"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - 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