{"id":2615,"date":"2019-01-27T15:17:42","date_gmt":"2019-01-27T21:17:42","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=2615"},"modified":"2019-01-27T15:17:42","modified_gmt":"2019-01-27T21:17:42","slug":"conquistando-escalones","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/tr\/organization-interview\/2019\/01\/27\/conquistando-escalones\/","title":{"rendered":"ORGAN\u0130ZASYON: Conquistando Escalones"},"content":{"rendered":"
\"\"<\/figure>\n\n\n\n

KURULU\u015eUN ADI<\/strong>: CONQUISTANDO ESCALONES<\/p>\n\n\n\n

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

FACEBOOK:        <\/strong> www.facebook.com\/conquistandoescalones<\/a><\/p>\n\n\n\n

TWITTER:             <\/strong>@AceDistrofia<\/a><\/p>\n\n\n\n

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

Limb Girdle Muscular Dystrophy tip 1F'ye (LGMD1F) odaklan\u0131yoruz  <\/strong><\/p>\n\n\n\n

E\u011eER BIR ALT T\u00dcRE ODAKLANIRSANIZ\nBIR KAYIT DEFTERI VAR MI VE HASTALAR NASIL KATILABILIR? <\/strong><\/p>\n\n\n\n

Evet, bir hasta kay\u0131t defteri olu\u015fturduk ve hastalar Biz<\/g> adresine bir e-posta g\u00f6ndererek conquistandoescalones@gmail.com<\/a> <\/p>\n\n\n\n

KURULU\u015eUNUZ KAR AMACI G\u00dcTMEYEN BI\u0307R KURULU\u015e MU? E\u011eER \u00d6YLEYSE, NE T\u00dcR:         <\/strong><\/p>\n\n\n\n

Evet, biz kay\u0131tl\u0131y\u0131z\nSpan ve \u0130talya'da. <\/p>\n\n\n\n

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

Dernek\nHastal\u0131\u011f\u0131m\u0131z hakk\u0131nda bilgi yayma gereklili\u011fi nedeniyle olu\u015fturuldu ve\nara\u015ft\u0131rma yapmak i\u00e7in gerekli fonlar\u0131 bulmak.\nUzuv-ku\u015fak kas distrofisinden etkilenen bireyler taraf\u0131ndan kurulmu\u015ftur\n1F (LGMD-1F) 2015 y\u0131l\u0131nda ke\u015ffedilmi\u015ftir \u00e7\u00fcnk\u00fc bu y\u0131l i\u00e7inde\nLGMD1F'ye neden olan gendeki mutasyon, etkilenen ki\u015fiyi AIDS'e kar\u015f\u0131 ba\u011f\u0131\u015f\u0131k hale getirir ve\nbu k\u00fcresel salg\u0131na kar\u015f\u0131 olas\u0131 bir tedavinin giri\u015f kap\u0131s\u0131 olmalar\u0131n\u0131 sa\u011flar.<\/p>\n\n\n\n

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

Misyonumuz, nadir hastal\u0131klar ve nadir hastal\u0131klar\u0131n ara\u015ft\u0131r\u0131lmas\u0131n\u0131n \u00f6nemi konusunda fark\u0131ndal\u0131k yaratmakt\u0131r. Ayr\u0131ca, finanse etti\u011fimiz bilimsel ara\u015ft\u0131rmalar i\u00e7in LGMD1F hastalar\u0131ndan olu\u015fan bir veri taban\u0131 olu\u015fturuyoruz. LGMD1F \u00fczerinde \u00e7al\u0131\u015fan ara\u015ft\u0131rma laboratuvarlar\u0131yla temasa ge\u00e7iyoruz. Ara\u015ft\u0131rmalar\u0131 finanse etmek i\u00e7in s\u00fcrekli olarak para toplamaya \u00e7al\u0131\u015f\u0131yoruz. Y\u00fcr\u00fcmemize yard\u0131m edin, ya\u015famam\u0131za yard\u0131m edin! Birlikte ba\u015farabiliriz. \u00a0<\/p>\n\n\n\n

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

\u015eunlara destek sa\u011fl\u0131yoruz\nLGMD1F ve LGMD'nin di\u011fer alt tipleri olan hastalar ve LGMD1F Hasta\nKay\u0131t. Ayr\u0131ca, s\u00fcrekli olarak\nara\u015ft\u0131rma laboratuvarlar\u0131 ile temas. <\/p>\n\n\n\n

\u00d6ncelikli olarak odakland\u0131\u011f\u0131m\u0131z\nhasta hizmetlerinden ziyade tedavilerin ara\u015ft\u0131r\u0131lmas\u0131 ve geli\u015ftirilmesine odaklanmaktad\u0131r.  <\/p>\n\n\n\n

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

 3 y\u0131l i\u00e7inde yeni projeleri finanse edebildik\nLGMD1F \u00fczerine daha \u00f6nce durdurulmu\u015f olan ara\u015ft\u0131rma \u00e7al\u0131\u015fmalar\u0131. <\/strong><\/p>\n\n\n\n

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

Bir\u00e7ok farkl\u0131 projeyi finanse ediyoruz.\nCRISPR ve halihaz\u0131rda piyasada bulunan ila\u00e7lar\u0131n yeniden tasarlanmas\u0131 da dahil olmak \u00fczere yakla\u015f\u0131mlar\ndi\u011fer hastal\u0131klar. <\/p>\n\n\n\n

INSANLAR NASIL\nKURULU\u015eUNUZU DESTEKLEMEYE DAHIL OLMAK:<\/strong><\/p>\n\n\n\n

\u0130nsanlar yard\u0131m edebilir\nAra\u015ft\u0131rma i\u00e7in para toplamak amac\u0131yla etkinlikler d\u00fczenliyor, ba\u011f\u0131\u015f yap\u0131yor ya da\ndi\u011fer yollar (web sitemizin bu ba\u011flant\u0131s\u0131na bak\u0131n\nhttp:\/\/www.conquistandoescalones.org\/web\/en\/how-to-help-us\/)<\/p>\n\n\n\n

EN IYI YOL NEDIR\nKURULU\u015eUNUZLA ILETI\u015eIME GE\u00c7MEK I\u00c7IN:<\/strong><\/p>\n\n\n\n

\u0130nsanlar bizimle \u015fu adresten ileti\u015fime ge\u00e7ebilir\nconquistandoescalones@gmail.com ya da Facebook \u00fczerinden bize mesaj g\u00f6nderebilirsiniz.\n<\/p>\n\n\n\n

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

\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\nLGMD1F tan\u0131n\u0131z varsa l\u00fctfen bizimle ileti\u015fime ge\u00e7in!!!\n\n\n\n<\/p>","protected":false},"excerpt":{"rendered":"

NAME OF ORGANIZATION:          CONQUISTANDO ESCALONES WEBSITE:              www.conquistandoescalones.org FACEBOOK:        […]<\/p>","protected":false},"author":1,"featured_media":2614,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[94,101,95],"tags":[],"class_list":["post-2615","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-organization-interview","category-lgmd1f","category-organization"],"acf":[],"yoast_head":"\nORGANIZATION: Conquistando Escalones - 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\/01\/27\/conquistando-escalones\/\" \/>\n<meta property=\"og:locale\" content=\"tr_TR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"ORGANIZATION: Conquistando Escalones - 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