{"id":3076,"date":"2019-10-22T10:36:44","date_gmt":"2019-10-22T15:36:44","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=3076"},"modified":"2019-10-22T10:36:44","modified_gmt":"2019-10-22T15:36:44","slug":"lgmd-1d-foundation","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/tr\/organization-interview\/2019\/10\/22\/lgmd-1d-foundation\/","title":{"rendered":"ORGAN\u0130ZASYON: LGMD-1D DNAJB6 Vakf\u0131"},"content":{"rendered":"
\"\"<\/figure>\n\n\n\n

KURULU\u015eUN ADI<\/strong>: LGMD-1D DNAJB6 Vakf\u0131<\/p>\n\n\n\n

WEB S\u0130TES\u0130:<\/strong>              www.lgmd1d.org<\/a> <\/p>\n\n\n\n

FACEBOOK:        <\/strong>https:\/\/www.facebook.com\/LGMD.1D<\/a> <\/p>\n\n\n\n

KURULU\u015eUNUZ HANGI\u0307 LGMD ALT TI\u0307PI\u0307NE ODAKLANIYOR:   <\/strong><\/p>\n\n\n\n

LGMD-1D, \u015fu anda LGMD 1A ila 1H i\u00e7in bir kay\u0131t olmam\u0131za ra\u011fmen<\/strong><\/p>\n\n\n\n

LGMD HASTA KAYDI VAR MI?    <\/strong><\/p>\n\n\n\n

Evet, \u015fu adresten eri\u015filebilir  <\/strong>www.lgmd1d.org<\/a><\/strong><\/p>\n\n\n\n

Kurulu\u015funuz bir\nK\u00e2r Amac\u0131 G\u00fctmeyen Kurulu\u015f mu? E\u011fer \u00f6yleyse, ne t\u00fcr:         <\/strong><\/p>\n\n\n\n

Evet, biz bir\n501 (c)(3) kar amac\u0131 g\u00fctmeyen bir kurulu\u015f<\/p>\n\n\n\n

NE ILHAM VERDI\nKURULU\u015eUNUZUN OLU\u015eTURULMASI<\/strong>:<\/p>\n\n\n\n

Ailemizin uzun LGMD-ID ge\u00e7mi\u015fi ve 40 y\u0131ll\u0131k tedavi aray\u0131\u015f\u0131! MDA taraf\u0131ndan desteklenen GRASP-LGMD projesinden ilham ald\u0131k.<\/p>\n\n\n\n

KURULU\u015eUNUZUN MISYONU NEDIR?<\/strong><\/p>\n\n\n\n

LGMD'lerin yeterince temsil edilmeyen otozomal dominant formlar\u0131 i\u00e7in uluslararas\u0131 bir kay\u0131t sa\u011flamak. \u0130htiyac\u0131 olan hastalar\u0131n seyahat masraflar\u0131n\u0131 kar\u015f\u0131lamak i\u00e7in yerel etkinlikler, Amazon Smile ve \u00e7evrimi\u00e7i ba\u011f\u0131\u015flar yoluyla ba\u011f\u0131\u015f topluyoruz. \u00d6zel bask\u0131n durumumuzu organize ederek ara\u015ft\u0131rmalar\u0131 ve tedaviyi h\u0131zland\u0131rabilece\u011fimizi umuyoruz.<\/p>\n\n\n\n

HANGI HIZMETLER\nKURULU\u015eUNUZUN SA\u011eLADI\u011eI:<\/strong><\/p>\n\n\n\n

LGMD-1D DNAJB6 Vakf\u0131, hastalar\u0131n ara\u015ft\u0131rma merkezlerine eri\u015febilmesi i\u00e7in organizasyon, i\u015fe al\u0131m ve finansman sa\u011flar.<\/p>\n\n\n\n

SEN\u0130N NEY\u0130N\nEN \u00c7OK GURUR DUYDU\u011eUM ORGANIZASYON:<\/strong><\/p>\n\n\n\n

\u0130nsanlar\u0131n tan\u0131\u015fmas\u0131 ve deneyimlerini payla\u015fmas\u0131 i\u00e7in bir web sitesi portal\u0131 ve Facebook toplulu\u011fu sa\u011flad\u0131k. \u0130htiya\u00e7 sahiplerinin seyahat masraflar\u0131n\u0131 \u00f6nemli \u00f6l\u00e7\u00fcde kar\u015f\u0131layacak kadar para toplad\u0131k.<\/p>\n\n\n\n

Yetim hastal\u0131\u011f\u0131 olanlar i\u00e7in bir topluluk, kay\u0131t ve geride b\u0131rak\u0131lm\u0131\u015f hissedenler i\u00e7in bir ses sa\u011flamak.<\/p>\n\n\n\n

D\u00dcNYANIN KURULU\u015eUNUZ HAKKINDA NE BI\u0307LMESI\u0307NI\u0307 I\u0307STI\u0307YORSUNUZ<\/strong>?<\/p>\n\n\n\n

E\u011fer bu yetim hastal\u0131\u011f\u0131 tedavi edebilirsek, daha bir\u00e7ok ilgisiz\ngenetik hastal\u0131klar fayda sa\u011flayacakt\u0131r. Biz\nsizin i\u00e7in burada, l\u00fctfen yararlan\u0131n!<\/p>\n\n\n\n

I\u0307NSANLAR KURULU\u015eUNUZU DESTEKLEMEYE NASIL KATKIDA BULUNABI\u0307LI\u0307R?<\/strong><\/p>\n\n\n\n

L\u00fctfen web sitemize bak\u0131n\u0131z: www.lgmd1d.org<\/a>  Bu ki\u015filer i\u00e7in web sitesinde ba\u011f\u0131\u015f yapmay\u0131 d\u00fc\u015f\u00fcn\u00fcn\ndaha az \u015fansl\u0131 olanlar. Bizi tan\u0131t\u0131n\nsitesine, misyonumuza ve ba\u011f\u0131\u015fta bulunun veya Amazon Smile'dan al\u0131\u015fveri\u015f yap\u0131n ve LGMD-1D DNAJB6'y\u0131 se\u00e7in\nTercih etti\u011finiz hay\u0131r kurumu olarak Vak\u0131f.<\/p>\n\n\n\n

KURULU\u015eUNUZLA I\u0307LETI\u0307\u015eI\u0307ME GE\u00c7MENI\u0307N EN I\u0307YI\u0307 YOLU NEDI\u0307R?<\/strong><\/p>\n\n\n\n

\u0130leti\u015fim bilgilerimiz web sitemizde yer almaktad\u0131r www.lgmd1d.org<\/a> veya e-posta g\u00f6nderin: wslowery.57@lgmd1d.org<\/a><\/p>\n\n\n\n

EKLEMEK ISTEDI\u011eINIZ BA\u015eKA BIR \u015eEY VAR MI?<\/strong><\/p>\n\n\n\n

Bu uzun bir yolculuk ve bundan be\u015f y\u0131l sonra t\u00fcm bunlar\u0131n kar\u015f\u0131l\u0131\u011f\u0131n\u0131 alaca\u011f\u0131z. Washington \u00dcniversitesi St Louis N\u00f6rom\u00fcsk\u00fcler Klini\u011fi'ndeki ara\u015ft\u0131rma ve destek personeline te\u015fekk\u00fcr etmek isteriz, onlar olmadan bu m\u00fcmk\u00fcn olmazd\u0131. Te\u015fekk\u00fcrler, William S Lowery, MD<\/p>","protected":false},"excerpt":{"rendered":"

NAME OF ORGANIZATION:         LGMD-1D DNAJB6 Foundation WEBSITE:              www.lgmd1d.org FACEBOOK:        […]<\/p>","protected":false},"author":1,"featured_media":3077,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[102,94,104,95],"tags":[],"class_list":["post-3076","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-lgmd-d1-dnajb6-related","category-organization-interview","category-lgmd1d","category-organization"],"acf":[],"yoast_head":"\nORGANIZATION: LGMD-1D DNAJB6 Foundation - 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\/10\/22\/lgmd-1d-foundation\/\" \/>\n<meta property=\"og:locale\" content=\"tr_TR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"ORGANIZATION: LGMD-1D DNAJB6 Foundation - 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