{"id":5397,"date":"2021-07-27T00:20:35","date_gmt":"2021-07-27T00:20:35","guid":{"rendered":"https:\/\/www.lgmd-info.org\/?p=5397"},"modified":"2024-02-09T14:24:03","modified_gmt":"2024-02-09T14:24:03","slug":"lgmd-organization-uildm","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/tr\/organization-interview\/2021\/07\/27\/lgmd-organization-uildm\/","title":{"rendered":"LGMD ORGAN\u0130ZASYON: UILDM LGMD Grubu"},"content":{"rendered":"

\"Uildm\"<\/p>\n

ORGAN\u0130ZASYON<\/strong>: UILDM LGMD Grubu<\/p>\n

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

FACEBOOK: <\/strong>https:\/\/www.facebook.com\/uildm.naz<\/a><\/p>\n

TWITTER: <\/strong>https:\/\/twitter.com\/UILDMnazionale<\/a><\/p>\n

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

UILDM LGMD Grubu belirli bir LGMD alt t\u00fcr\u00fcne odaklanmaz. T\u00fcm LGMD t\u00fcrlerine at\u0131fta bulunur.<\/p>\n

KURULU\u015eUNUZUN KURULMASINA NE I\u0307LHAM VERDI\u0307?<\/strong>:<\/p>\n

Limb-Girdle Musk\u00fcler Distrofi ile ya\u015fayan insanlar\u0131n, ihtiya\u00e7lar\u0131na cevap bulmalar\u0131 zor oldu\u011fundan ve \u00e7o\u011fu zaman Kurumlar taraf\u0131ndan unutulduklar\u0131ndan, onlara seslerini duyurabilecek temsili bir grubun par\u00e7as\u0131 olma ihtiyac\u0131ndan ilham ald\u0131k.<\/p>\n

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

UILDM LGMD Grubu faaliyetleri \u015funlara odaklanmaktad\u0131r: - Bir LGMD toplulu\u011funun geli\u015fimini te\u015fvik etmek; - LGMD hakk\u0131nda bilimsel ve t\u0131bbi bilgi sa\u011flamak; - Ayn\u0131 durumu payla\u015fan ki\u015filer aras\u0131nda deneyim ve tavsiye al\u0131\u015fveri\u015fini desteklemek.<\/p>\n

KURULU\u015eUNUZ HANGI HIZMETLERI SA\u011eLIYOR:<\/strong><\/p>\n

\u0130ki WhatsApp grubu olu\u015fturduk: biri LGMD d\u00fcnyas\u0131ndan haberler ve g\u00fcncellemeler sa\u011flamak i\u00e7in, di\u011feri ise \u00fcyelerin fikir, deneyim ve tavsiye al\u0131\u015fveri\u015finde bulunabilece\u011fi a\u00e7\u0131k bir kendi kendine yard\u0131m grubu. Bire bir fikir al\u0131\u015fveri\u015fi sa\u011flamak ve grubun faaliyetleri hakk\u0131nda bilgi payla\u015fmak i\u00e7in d\u00fczenli \u00e7evrimi\u00e7i toplant\u0131lar d\u00fczenliyoruz. Ayr\u0131ca Bilimsel Komitemiz do\u011frultusunda bilim ve t\u0131p d\u00fcnyas\u0131ndan uzmanlarla \u00e7evrimi\u00e7i web seminerleri d\u00fczenliyoruz.<\/p>\n

KURULU\u015eUNUZUN EN \u00c7OK GURUR DUYDU\u011eU \u015eEY NEDIR?<\/strong><\/p>\n

Grup \u00e7ok motive olmu\u015f durumda ve say\u0131lar\u0131 artmaya devam ediyor. \u00dcyeler birbirlerine yard\u0131m etmeye istekli ve genellikle ortak sorunlara birlikte \u00e7\u00f6z\u00fcm buluyorlar.<\/p>\n

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

\u0130nsanlar\u0131n UILDM LGMD Grubunun var oldu\u011funu ve t\u00fcm LGMD toplulu\u011fu i\u00e7in mevcut oldu\u011funu bilmelerini istiyoruz. Grubumuz ne kadar b\u00fcy\u00fcrse, taleplerimize o kadar g\u00fc\u00e7 verebiliriz.<\/p>\n

\u0130NSANLAR KURULU\u015eUNUZU DESTEKLEMEYE NASIL DAHIL OLABILIRLER?<\/strong><\/p>\n

\u0130nsanlar gruppocingoli@uildm.it mail adresine yazarak ve WhatsApp grubumuza kat\u0131lmak isteyerek dahil olabilirler. Ayr\u0131ca UILDM web sitesinde ve Facebook sayfas\u0131nda faaliyetlerimiz hakk\u0131nda g\u00fcncel bilgiler bulabilirler.<\/p>\n

KURULU\u015eUNUZLA ILETI\u015eIME GE\u00c7MENIN EN IYI YOLU NEDIR?<\/strong><\/p>\n

\u0130nsanlar bize e-posta yoluyla \u015fu adresten ula\u015fabilirler gruppocingoli@uildm.it<\/a><\/p>\n<\/div><\/div><\/div><\/div><\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":3,"featured_media":5421,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[94,95],"tags":[],"class_list":["post-5397","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-organization-interview","category-organization"],"acf":[],"yoast_head":"\nLGMD ORGANIZATION: UILDM LGMD Group - 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\/2021\/07\/27\/lgmd-organization-uildm\/\" \/>\n<meta property=\"og:locale\" content=\"tr_TR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"LGMD ORGANIZATION: UILDM LGMD Group - 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