Bu benzersiz proje, klinisyenlere, hastalara, aile \u00fcyelerine ve bak\u0131c\u0131lara LGMD fark\u0131ndal\u0131\u011f\u0131 getirmeye odaklanm\u0131\u015ft\u0131r. LGMD Advocacy Bundles projesi, personel ve hastalar i\u00e7in yararl\u0131 ara\u00e7lar ve kaynaklar sa\u011flarken, savunuculuk deste\u011fi yoluyla klinisyenler ve hastalar aras\u0131ndaki bo\u015flu\u011fu doldurmaktad\u0131r.<\/p>\n<\/div><\/div><\/div>
Klini\u011finiz i\u00e7in LGMD Advocacy Bundle projesi ile ilgileniyorsan\u0131z, l\u00fctfen info@LGMD-Info.org adresinden bizimle ileti\u015fime ge\u00e7in.<\/h4><\/div><\/div><\/div><\/div><\/div><\/div>![\"Lab](\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/08\/LAB-Mockup-Web-080924.png\" "\\"Laboratuvar")
<\/span><\/div><\/div><\/div><\/div><\/div>Proje Hedefleri<\/strong><\/h3><\/div>- 1<\/span>\n
Klinisyenlere, hastalara, aile \u00fcyelerine, bak\u0131c\u0131lara LGMD fark\u0131ndal\u0131\u011f\u0131 kazand\u0131rmak<\/p>\n<\/div><\/li>
- 2<\/span>\n
Semptom y\u00f6netimine yard\u0131mc\u0131 olmak ve hayati \u00f6nem ta\u015f\u0131yan mevcut ve gelecekteki klinik ara\u015ft\u0131rmalara eri\u015fmek i\u00e7in tan\u0131n\u0131n genetik olarak do\u011frulanmas\u0131n\u0131n \u00f6nemini vurgulay\u0131n<\/p>\n<\/div><\/li>
- 3<\/span>\n
Klinisyenleri ve hastalar\u0131 LGMD hasta kay\u0131tlar\u0131 ve ara\u015ft\u0131rmalar\u0131n ilerletilmesinde oynad\u0131klar\u0131 rol hakk\u0131nda e\u011fitmek<\/p>\n<\/div><\/li>
- 4<\/span>\n
Hastalar\u0131n ve ailelerin destek bulabilmeleri ve LGMD yolculuklar\u0131nda kendilerini yaln\u0131z hissetmemeleri i\u00e7in LGMD toplulu\u011funun enerjisini ve tutkusunu payla\u015f\u0131n<\/p>\n<\/div><\/li>
- 5<\/span>\n
Klinisyenler ve hastalar aras\u0131ndaki bo\u015flu\u011fu doldurmak (savunuculuk deste\u011fi yoluyla)<\/p>\n<\/div><\/li>
- 6<\/span>\n
Personel ve hastalar i\u00e7in yard\u0131mc\u0131 ara\u00e7lar sa\u011flay\u0131n<\/p>\n<\/div><\/li>
- 7<\/span>\n
Klinik ili\u015fkiler kurun ve savunuculuk camias\u0131nda hen\u00fcz tan\u0131nmayan yeni klinisyenlerle ba\u011flant\u0131 kurun<\/p>\n<\/div><\/li><\/ul><\/div><\/div>
Kat\u0131l\u0131mc\u0131 Klinik Alanlar\u0131<\/strong><\/h4><\/div>The clinic sites participating in the LGMD Advocacy Bundles project include:<\/p>\n
- Kaliforniya \u00dcniversitesi, Irvine, CA<\/p>\n
- Colorado \u00dcniversitesi, Denver, CO<\/p>\n
- Nationwide \u00c7ocuk Hastanesi, Columbus, OH<\/p>\n
- INTEGRIS N\u00f6robilim Enstit\u00fcs\u00fc, Oklahoma City, OK<\/p>\n
- Washington \u00dcniversitesi, St. Louis, MO<\/p>\n
- Virginia Commonwealth \u00dcniversitesi, Richmond, VA<\/p>\n
\u2022 Froedtert Memorial Hospital, Milwaukee, WI<\/p>\n<\/div><\/div><\/div><\/div><\/div>
<\/div><\/div><\/div><\/div><\/div><\/div>Kaynaklar<\/strong><\/h2><\/div><\/div><\/div><\/div><\/div>
<\/span><\/div><\/div><\/div><\/div><\/div>Proje Hedefleri<\/strong><\/h3><\/div>- 1<\/span>\n
Klinisyenlere, hastalara, aile \u00fcyelerine, bak\u0131c\u0131lara LGMD fark\u0131ndal\u0131\u011f\u0131 kazand\u0131rmak<\/p>\n<\/div><\/li>
- 2<\/span>\n
Semptom y\u00f6netimine yard\u0131mc\u0131 olmak ve hayati \u00f6nem ta\u015f\u0131yan mevcut ve gelecekteki klinik ara\u015ft\u0131rmalara eri\u015fmek i\u00e7in tan\u0131n\u0131n genetik olarak do\u011frulanmas\u0131n\u0131n \u00f6nemini vurgulay\u0131n<\/p>\n<\/div><\/li>
- 3<\/span>\n
Klinisyenleri ve hastalar\u0131 LGMD hasta kay\u0131tlar\u0131 ve ara\u015ft\u0131rmalar\u0131n ilerletilmesinde oynad\u0131klar\u0131 rol hakk\u0131nda e\u011fitmek<\/p>\n<\/div><\/li>
- 4<\/span>\n
Hastalar\u0131n ve ailelerin destek bulabilmeleri ve LGMD yolculuklar\u0131nda kendilerini yaln\u0131z hissetmemeleri i\u00e7in LGMD toplulu\u011funun enerjisini ve tutkusunu payla\u015f\u0131n<\/p>\n<\/div><\/li>
- 5<\/span>\n
Klinisyenler ve hastalar aras\u0131ndaki bo\u015flu\u011fu doldurmak (savunuculuk deste\u011fi yoluyla)<\/p>\n<\/div><\/li>
- 6<\/span>\n
Personel ve hastalar i\u00e7in yard\u0131mc\u0131 ara\u00e7lar sa\u011flay\u0131n<\/p>\n<\/div><\/li>
- 7<\/span>\n
Klinik ili\u015fkiler kurun ve savunuculuk camias\u0131nda hen\u00fcz tan\u0131nmayan yeni klinisyenlerle ba\u011flant\u0131 kurun<\/p>\n<\/div><\/li><\/ul><\/div><\/div>
Kat\u0131l\u0131mc\u0131 Klinik Alanlar\u0131<\/strong><\/h4><\/div>The clinic sites participating in the LGMD Advocacy Bundles project include:<\/p>\n
- Kaliforniya \u00dcniversitesi, Irvine, CA<\/p>\n
- Colorado \u00dcniversitesi, Denver, CO<\/p>\n
- Nationwide \u00c7ocuk Hastanesi, Columbus, OH<\/p>\n
- INTEGRIS N\u00f6robilim Enstit\u00fcs\u00fc, Oklahoma City, OK<\/p>\n
- Washington \u00dcniversitesi, St. Louis, MO<\/p>\n
- Virginia Commonwealth \u00dcniversitesi, Richmond, VA<\/p>\n
\u2022 Froedtert Memorial Hospital, Milwaukee, WI<\/p>\n<\/div><\/div><\/div><\/div><\/div>
<\/div><\/div><\/div><\/div><\/div><\/div>Kaynaklar<\/strong><\/h2><\/div><\/div><\/div><\/div><\/div>
Klinisyenlere, hastalara, aile \u00fcyelerine, bak\u0131c\u0131lara LGMD fark\u0131ndal\u0131\u011f\u0131 kazand\u0131rmak<\/p>\n<\/div><\/li>
Semptom y\u00f6netimine yard\u0131mc\u0131 olmak ve hayati \u00f6nem ta\u015f\u0131yan mevcut ve gelecekteki klinik ara\u015ft\u0131rmalara eri\u015fmek i\u00e7in tan\u0131n\u0131n genetik olarak do\u011frulanmas\u0131n\u0131n \u00f6nemini vurgulay\u0131n<\/p>\n<\/div><\/li>
Klinisyenleri ve hastalar\u0131 LGMD hasta kay\u0131tlar\u0131 ve ara\u015ft\u0131rmalar\u0131n ilerletilmesinde oynad\u0131klar\u0131 rol hakk\u0131nda e\u011fitmek<\/p>\n<\/div><\/li>
Hastalar\u0131n ve ailelerin destek bulabilmeleri ve LGMD yolculuklar\u0131nda kendilerini yaln\u0131z hissetmemeleri i\u00e7in LGMD toplulu\u011funun enerjisini ve tutkusunu payla\u015f\u0131n<\/p>\n<\/div><\/li>
Klinisyenler ve hastalar aras\u0131ndaki bo\u015flu\u011fu doldurmak (savunuculuk deste\u011fi yoluyla)<\/p>\n<\/div><\/li>
Personel ve hastalar i\u00e7in yard\u0131mc\u0131 ara\u00e7lar sa\u011flay\u0131n<\/p>\n<\/div><\/li>
Klinik ili\u015fkiler kurun ve savunuculuk camias\u0131nda hen\u00fcz tan\u0131nmayan yeni klinisyenlerle ba\u011flant\u0131 kurun<\/p>\n<\/div><\/li><\/ul><\/div><\/div>
Kat\u0131l\u0131mc\u0131 Klinik Alanlar\u0131<\/strong><\/h4><\/div>The clinic sites participating in the LGMD Advocacy Bundles project include:<\/p>\n
- Kaliforniya \u00dcniversitesi, Irvine, CA<\/p>\n
- Colorado \u00dcniversitesi, Denver, CO<\/p>\n
- Nationwide \u00c7ocuk Hastanesi, Columbus, OH<\/p>\n
- INTEGRIS N\u00f6robilim Enstit\u00fcs\u00fc, Oklahoma City, OK<\/p>\n
- Washington \u00dcniversitesi, St. Louis, MO<\/p>\n
- Virginia Commonwealth \u00dcniversitesi, Richmond, VA<\/p>\n
\u2022 Froedtert Memorial Hospital, Milwaukee, WI<\/p>\n<\/div><\/div><\/div><\/div><\/div>
<\/div><\/div><\/div><\/div><\/div><\/div>Kaynaklar<\/strong><\/h2><\/div><\/div><\/div><\/div><\/div>
The clinic sites participating in the LGMD Advocacy Bundles project include:<\/p>\n
- Kaliforniya \u00dcniversitesi, Irvine, CA<\/p>\n
- Colorado \u00dcniversitesi, Denver, CO<\/p>\n
- Nationwide \u00c7ocuk Hastanesi, Columbus, OH<\/p>\n
- INTEGRIS N\u00f6robilim Enstit\u00fcs\u00fc, Oklahoma City, OK<\/p>\n
- Washington \u00dcniversitesi, St. Louis, MO<\/p>\n
- Virginia Commonwealth \u00dcniversitesi, Richmond, VA<\/p>\n
\u2022 Froedtert Memorial Hospital, Milwaukee, WI<\/p>\n<\/div><\/div><\/div><\/div><\/div>
![\"Cure](\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/04\/CURE-Poster.webp\" "\\"Tedavi")
<\/span><\/div><\/div><\/div>