罹患肢腰肌营养不良症（LGMD）等罕见疾病的挑战之一，是如何找到对疾病过程有充分了解的医生和其他医疗保健专家。
GRASP - LGMD 联合会
"(《世界人权宣言》) G遗传 R决议和 A评估 S橄榄形 Phenotypes in LGMD (GRASP-LGMD) consortium was created in 2018 and includes sites in the United States and abroad. The overarching mission of the GRASP-LGMD consortium is to hasten therapeutic development in the LGMDs. The consortium includes:
加利福尼亚州: University of California in Irvine — Dr. Tahseen Mozaffar MD
科罗拉多州: University of Colorado Health In Aurora – Dr. Stacy Dixon, MD
佛罗里达州: University of Florida in Gainesville – Dr. Sub Subramony, MD
印第安纳州: The Community Health Clinic in Shipshewana – Dr. Zineb Ammous, MD
爱荷华州: University of Iowa in Iowa City — Dr. Katherine Mathews, MD
堪萨斯州: Kansas University Medical Center in Kansas City — Dr. Jeffrey Statland, MD
马里兰州: Kennedy Krieger Institute in Baltimore — Dr. Doris Leung, MD
明尼苏达州: University of Minnesota in Minneapolis — Dr. Peter Kang, MD
密苏里州: Washington University in St. Louis — Dr. Conrad Weihl, MD, PhD
北卡罗来纳州: Atrium Health in Charlotte – Dr. Urvi Desai, MD
Ohio: Nationwide Children’s Hospital in Columbus — Lindsay Alfono, PT, DPT, PCS
弗吉尼亚州: Virginia Commonwealth University in Richmond — Dr. Nicholas Johnson, MD
美国以外的会员
- 丹麦：哥本哈根的哥本哈根大学 - John Vissing 博士，医学博士
Italy: NEuroMuscular Omnicentre (NEMO) in Milano – Dr. Valeria Sansone, MD
- 荷兰： 莱顿的莱顿大学 - Erik Niks 博士，医学博士
New Zealand: University of Auckland in Grafton, Auckland – Dr. Richard Roxburgh
United Kingdom: Newcastle University in Newcastle upon Tyne — Dr. Jordi Diaz-Manera, MD
要了解有关 GRASP 及其正在进行的研究的更多信息，请访问 MDCRN 网站
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