{"id":91,"date":"2021-02-10T17:49:18","date_gmt":"2021-02-10T17:49:18","guid":{"rendered":"https:\/\/www.lgmd-info.org\/?page_id=91"},"modified":"2025-12-11T17:53:44","modified_gmt":"2025-12-11T17:53:44","slug":"about-lgmd-awareness-day","status":"publish","type":"page","link":"https:\/\/www.lgmd-info.org\/tr\/awareness-day\/about-lgmd-awareness-day\/","title":{"rendered":"LGMD Fark\u0131ndal\u0131k G\u00fcn\u00fc Hakk\u0131nda"},"content":{"rendered":"

\"Lgmd<\/span><\/div><\/div><\/div>

Limb-Girdle Muscular Dystrophy Awareness Day is an annual collaborative effort to globally raise awareness of individuals living with limb-girdle muscular dystrophy (LGMD). The 12th annual Global \u201cLGMD Awareness Day\u201d will be held on September 30, 2026.<\/p>\n

Ekstremite ku\u015fa\u011f\u0131 kas distrofisi, \u00e7ok uzun zamand\u0131r ara\u015ft\u0131rmac\u0131lar\u0131n, sa\u011fl\u0131k hizmeti sa\u011flay\u0131c\u0131lar\u0131n\u0131n veya genel kamuoyunun hak etti\u011fi ilgiyi g\u00f6rmeyen, \u00f6ks\u00fcz kalm\u0131\u015f nadir bir hastal\u0131kt\u0131r. LGMD ile ya\u015fayan bir\u00e7ok hasta bile LGMD tan\u0131s\u0131 ve ilerleyen hastal\u0131k s\u00fcreci hakk\u0131nda s\u0131n\u0131rl\u0131 bilgiye sahiptir.<\/p>\n

Amac\u0131m\u0131z, LGMD d\u00fcnyan\u0131n her yerinde ve t\u00fcm etnik gruplar aras\u0131nda g\u00f6r\u00fcld\u00fc\u011f\u00fc i\u00e7in, \u00e7ocukluktan yeti\u015fkinli\u011fe kadar bir\u00e7ok ki\u015finin hayat\u0131n\u0131 etkileyebilen bu nadir n\u00f6rom\u00fcsk\u00fcler hastal\u0131k grubuna k\u00fcresel olarak dikkat \u00e7ekmektir.<\/p>\n<\/div><\/div><\/div>

Fark\u0131ndal\u0131k, anlay\u0131\u015f ve birlikten b\u00fcy\u00fck g\u00fc\u00e7 do\u011far. LGMD toplulu\u011fu, her y\u0131l birlikte kampanya y\u00fcr\u00fctt\u00fc\u011f\u00fcm\u00fczde ve limb-girdle muscular dystrophy (LGMD) i\u00e7in tan\u0131n\u0131rl\u0131k kazand\u0131\u011f\u0131m\u0131zda k\u00fcresel ba\u011flanabilirli\u011fi g\u00f6stermektedir. LGMD'nin 30'dan fazla farkl\u0131 genetik tipiyle, k\u00fcresel olarak i\u015fbirli\u011fi yapmak bizi tek ba\u015f\u0131m\u0131za olabilece\u011fimizden daha g\u00fc\u00e7l\u00fc k\u0131l\u0131yor.<\/p>\n

LGMD'li t\u00fcm bireyleri, aile \u00fcyelerini, kurulu\u015flar\u0131, sa\u011fl\u0131k profesyonellerini, ara\u015ft\u0131rmac\u0131lar\u0131, ila\u00e7 geli\u015ftiricileri, halk sa\u011fl\u0131\u011f\u0131 kurulu\u015flar\u0131n\u0131 ve LGMD ile ilgilenen t\u00fcm dernekleri bir araya gelmeye ve bu nadir ve ilerleyici n\u00f6rom\u00fcsk\u00fcler hastal\u0131klar hakk\u0131nda fark\u0131ndal\u0131\u011f\u0131 art\u0131rmam\u0131za yard\u0131mc\u0131 olmaya davet ediyoruz.<\/p>\n

\u0130ster uzun s\u00fcredir topluluk \u00fcyesi olun ister sahneye yeni \u00e7\u0131km\u0131\u015f olun, LGMD Fark\u0131ndal\u0131k G\u00fcn\u00fc etkinliklerimize kat\u0131l\u0131m\u0131n\u0131z \u00f6nemlidir. Fark\u0131ndal\u0131k, d\u00fcnyan\u0131n her yerinden daha fazla bireyin, en sevdi\u011finiz platformlarda LGMD Fark\u0131ndal\u0131k etiketini yeniden payla\u015farak, ba\u011f\u0131rarak ve foto\u011fraf \u00e7ekerek ruhlar\u0131n\u0131 uzaktan payla\u015fmas\u0131yla \u00e7ok daha h\u0131zl\u0131 yay\u0131labilir. Eylemde g\u00fc\u00e7 vard\u0131r.<\/p>\n

Sosyal medya arac\u0131l\u0131\u011f\u0131yla kat\u0131l\u0131m ve fark\u0131ndal\u0131\u011f\u0131n daha geni\u015f bir eri\u015fim ve etkiye sahip olaca\u011f\u0131na inan\u0131yoruz. K\u00fcresel giri\u015fimlerimizden ve LGMD Fark\u0131ndal\u0131k G\u00fcn\u00fc'n\u00fcn e\u011fitim bile\u015fenlerinden haberdar olmak i\u00e7in l\u00fctfen Facebook'ta bize kat\u0131l\u0131n. LGMD hakk\u0131nda e\u011fitici payla\u015f\u0131mlar yap\u0131yor, LGMD \"Spotlight R\u00f6portajlar\u0131 \"na yer veriyor ve t\u00fcm toplumu ilgilendiren bilgiler payla\u015f\u0131yoruz. Birlikte, limb-girdle musk\u00fcler distrofi ile ya\u015fayanlar i\u00e7in bir fark yaratabiliriz.<\/p>\n<\/div><\/div><\/div><\/div><\/div>

HERKES LGMD FARKINDALIK G\u00dcN\u00dcNE DESTEK VERMEYE DAVETLI\u0307!<\/h3><\/div>
<\/div><\/div>

Bireyleri, hastalar\u0131, aile \u00fcyelerini, hasta \u00f6rg\u00fctlerini, sa\u011fl\u0131k profesyonellerini, ara\u015ft\u0131rmac\u0131lar\u0131, ila\u00e7 geli\u015ftiricilerini, halk sa\u011fl\u0131\u011f\u0131 \u00f6rg\u00fctlerini ve genel halk\u0131 kat\u0131lmaya te\u015fvik ediyoruz. Ne kadar \u00e7ok ki\u015fi kat\u0131l\u0131rsa o kadar iyi! Limb-girdle musk\u00fcler distrofisi (LGMD) olan bireyler olarak farkl\u0131 co\u011frafi b\u00f6lgelerde ya\u015f\u0131yor, farkl\u0131 diller konu\u015fuyor ve farkl\u0131 gelenekleri g\u00f6zlemliyoruz.<\/p>\n

Eyl\u00fcl ay\u0131n\u0131n 30'u yakla\u015f\u0131rken kat\u0131l\u0131m i\u00e7in \u00e7e\u015fitli yollar olacakt\u0131r. Ki\u015fisel deneyimlerin payla\u015f\u0131m\u0131, e\u011fitim materyalleri ve sosyal a\u011flar arac\u0131l\u0131\u011f\u0131yla LGMD konusunda fark\u0131ndal\u0131\u011f\u0131 art\u0131rmak i\u00e7in k\u00fcresel olarak birlikte \u00e7al\u0131\u015fabiliriz. Bu k\u00fcresel etkinli\u011fi b\u00f6lgenizde kutlaman\u0131n yollar\u0131n\u0131 bulmak i\u00e7in yarat\u0131c\u0131 olman\u0131z\u0131 te\u015fvik ediyoruz.<\/p><\/p><\/div>