One of the challenges of living with a rare disease such as limb-girdle muscular dystrophy (LGMD) is finding physicians and other health care specialists who have a good understanding of the disease process.
GRASP – LGMD Consortium:
The Genetic Resolution and Assessments Solving Phenotypes in LGMD (GRASP-LGMD) consortium was created in 2018 and currently includes 12 sites in the United States and European Union. The overarching mission of the GRASP-LGMD consortium is to hasten therapeutic development in the LGMDs. These consortium includes:
• California: University of California in Irvine — Dr. Tahseen Mozaffar MD
• Florida: University of Florida in Gainesville – Dr. Carla Zingariello, DO
• Iowa: University of Iowa in Iowa City — Dr. Katherine Mathews, MD
• Kansas: Kansas University Medical Center in Kansas City — Dr. Jeffrey Statland, MD (Clinical Research Liaison)
• Maryland: Kennedy Krieger Institute in Baltimore — Dr. Doris Leung, MD
• Minnesota: University of Minnesota in Minneapolis — Dr. Peter Kang, MD
• Missouri: Washington University in St. Louis — Dr. Conrad Weihl, MD, PhD (Biobank)
• North Carolina: Atrium Health in Charlotte – Dr. Urvi Desai, MD
• Ohio: Nationwide Children’s Hospital in Columbus — Linda Lowes, PT, PhD
• Virginia: Virginia Commonwealth University in Richmond — Dr. Nicholas Johnson, MD (Coordinating Center)
Sites Outside of the United States:
• Denmark: Copenhagen University in Copenhagen – Dr. John Vissing, MD
• United Kingdom: Newcastle University in Newcastle upon Tyne — Dr. Jordi Diaz-Manera, MD
