{"id":2317,"date":"2018-10-29T13:58:32","date_gmt":"2018-10-29T18:58:32","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=2317"},"modified":"2018-10-29T13:58:32","modified_gmt":"2018-10-29T18:58:32","slug":"organization-lgmd2i-research-fund","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/tr\/lgmd2i\/2018\/10\/29\/organization-lgmd2i-research-fund\/","title":{"rendered":"ORGAN\u0130ZASYON: LGMD2i Ara\u015ft\u0131rma Fonu"},"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\/10\/LGMD2i-Research-Fund.png\" alt=\"\" class=\"lazyload wp-image-2316\"\/><\/figure>\n\n\n<p><strong>KURULU\u015eUN ADI<\/strong>:         LGMD2i Ara\u015ft\u0131rma Fonu<\/p>\n<p><strong>WEB S\u0130TES\u0130:<\/strong>\u00a0 \u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <u><a href=\"http:\/\/www.lgmd2ifund.org\/\" target=\"_blank\" rel=\"noopener noreferrer\">http:\/\/www.lgmd2ifund.org\/<\/a><\/u><\/p>\n<p><strong>FACEBOOK:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong> <a href=\"https:\/\/www.facebook.com\/jeanpierre.laurent.58173\" target=\"_blank\" rel=\"noopener noreferrer\">https:\/\/www.facebook.com\/jeanpierre.laurent.58173<\/a><\/p>\n<p><strong>KURULU\u015eUNUZ HANGI\u0307 LGMD ALT TI\u0307PI\u0307NE ODAKLANIYOR:\u00a0 <\/strong><\/p>\n<p>Sadece LGMD2I'ye odaklan\u0131yoruz<\/p>\n<p><strong>BIR ALT T\u00dcRE ODAKLANIRSANIZ, BIR KAYIT DEFTERI VAR MI VE HASTALAR NASIL KATILABILIR? <\/strong><\/p>\n<p>Bir kay\u0131t kurulu\u015fundan haberdar\u0131z: Global FKRP Registry (https:\/\/www.fkrp-registry.org\/). Merkezi \u0130ngiltere'de olmakla birlikte, nadir hastal\u0131klar\u0131n do\u011fas\u0131na uyarlanm\u0131\u015f uluslararas\u0131 bir kay\u0131tt\u0131r. LGMD2I \u00e7ok nadir g\u00f6r\u00fclen bir hastal\u0131kt\u0131r, bu da ila\u00e7 geli\u015ftiricileri a\u00e7\u0131s\u0131ndan bu hastal\u0131ktan etkilenen ki\u015fi say\u0131s\u0131n\u0131n az oldu\u011fu anlam\u0131na gelmektedir. Geli\u015fmi\u015f klinik \u00e7al\u0131\u015fmalar \u00e7ok say\u0131da kat\u0131l\u0131mc\u0131 gerektirdi\u011finden, k\u00fcresel bir kay\u0131t defterine sahip olmak \u00f6nemli say\u0131da potansiyel kat\u0131l\u0131mc\u0131n\u0131n belirlenmesine yard\u0131mc\u0131 olacak ve \u00e7ok ihtiya\u00e7 duyulan denemelere ba\u015far\u0131l\u0131 bir \u015fekilde kaydolma \u015fans\u0131n\u0131 art\u0131racakt\u0131r. Bu kay\u0131t defterini uzun y\u0131llard\u0131r finansal olarak destekliyoruz ve LGMD2I toplulu\u011fu i\u00e7in b\u00fcy\u00fck bir de\u011fer haline geliyor.<\/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, biz k\u00e2r amac\u0131 g\u00fctmeyen \u00f6zel bir vak\u0131f\u0131z.<\/p>\n<p><strong>KURULU\u015eUNUZUN KURULMASINA NE I\u0307LHAM VERDI\u0307?<\/strong>:<\/p>\n<p>LGMD2I hastalar\u0131 odak noktam\u0131z\u0131n ve misyonumuzun belirlenmesinde etkili olmu\u015ftur.<\/p>\n<p><strong>KURULU\u015eUNUZUN M\u0130SYONU NED\u0130R:<\/strong><\/p>\n<p>Bir tedavi bulmak ve 2I hastalar\u0131n\u0131n ya\u015fam kalitelerini korumalar\u0131na yard\u0131mc\u0131 olmak.<\/p>\n<p><strong>KURULU\u015eUNUZ HANGI HIZMETLERI SA\u011eLIYOR:<\/strong><\/p>\n<p>Biz hizmet sa\u011flam\u0131yoruz. Ara\u015ft\u0131rmalar\u0131 finanse ediyor ve insanlar\u0131n hastal\u0131k ve t\u0131bbi bak\u0131m hakk\u0131nda bilgi edinmesine yard\u0131mc\u0131 oluyoruz.<\/p>\n<p><strong>KURULU\u015eUNUZUN EN \u00c7OK GURUR DUYDU\u011eU \u015eEY NEDIR?<\/strong><\/p>\n<p>T\u00fcm ana tedavi alanlar\u0131nda (gen terapisi, k\u00f6k h\u00fccreler, ...), te\u015fhis ve ara\u015ft\u0131rma ara\u00e7lar\u0131nda (fare modeli, kay\u0131t defteri, ...) programlar\u0131n ba\u015flat\u0131lmas\u0131n\u0131 finanse ettik. Kat\u0131l\u0131m\u0131m\u0131z sayesinde LGMD2I'deki ara\u015ft\u0131rmac\u0131 say\u0131s\u0131 d\u00fcnyan\u0131n t\u00fcm b\u00f6lgelerinde istikrarl\u0131 bir \u015fekilde artt\u0131. Belirli bir kritik ara\u015ft\u0131rma grubu kitlesi olu\u015fturmak \u00f6nemliydi; \u015fimdi bunu devam ettirmek \u00f6nemli...<\/p>\n<p><strong>D\u00fcnyan\u0131n KURULU\u015eUNUZ hakk\u0131nda ne bilmesini istersiniz?<\/strong>:<\/p>\n<p>Bizi tedaviye yakla\u015ft\u0131rabilecek her t\u00fcrl\u00fc LGMD2I ara\u015ft\u0131rma projesini finanse ediyor ve geni\u015f \u00f6l\u00e7ekli te\u015fhisi destekliyoruz. 2I i\u00e7in uygun tedavinin\/tedavinin, hatal\u0131 geni d\u00fczeltecek ve kaslarda olu\u015fan hasar\u0131 geri d\u00f6nd\u00fcrmeye yard\u0131mc\u0131 olacak y\u00f6ntemlerin bir kombinasyonu olaca\u011f\u0131na inan\u0131yoruz. LGMD2I i\u00e7in bir tedavi geli\u015ftirmek \u00fczere uygulanabilecek ara\u015ft\u0131rma bilgi birikimi ve teknolojilerine sahip t\u00fcm laboratuvarlar bizimle ileti\u015fime ge\u00e7melidir.<\/p>\n<p><strong>\u0130NSANLAR KURULU\u015eUNUZU DESTEKLEMEYE NASIL DAHIL OLABILIRLER?<\/strong><\/p>\n<p>Hastal\u0131k hakk\u0131nda bilgi sahibi olan veya bir tedavi bulmakla ilgilenen herkes bizimle ileti\u015fime ge\u00e7ebilir.<\/p>\n<p><strong>KURULU\u015eUNUZLA ILETI\u015eIME GE\u00c7MENIN EN IYI YOLU NEDIR?<\/strong><\/p>\n<p>Daha fazla bilgi i\u00e7in l\u00fctfen ileti\u015fime ge\u00e7iniz:  Dr. Jean-Pierre Laurent, Program Sorumlusu e-posta yoluyla: <a href=\"mailto:jpl@lgmd2ifund.org\" target=\"_blank\" rel=\"noopener noreferrer\">jpl@lgmd2ifund.org<\/a><\/p>\n<p><strong>\u00a0<\/strong><\/p>","protected":false},"excerpt":{"rendered":"<p>NAME OF ORGANIZATION:\u00a0 \u00a0\u00a0\u00a0\u00a0\u00a0 \u00a0LGMD2i Research Fund WEBSITE:\u00a0 \u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 http:\/\/www.lgmd2ifund.org\/ [&hellip;]<\/p>","protected":false},"author":1,"featured_media":2316,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[94,35,95],"tags":[],"class_list":["post-2317","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-organization-interview","category-lgmd2i","category-organization"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - 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