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 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:
- California: University of California in Irvine — Dr. Tahseen Mozaffar MD
Colorado: University of Colorado Health In Aurora – Dr. Stacy Dixon, MD
- Florida: University of Florida in Gainesville – Dr. Carla Zingariello, DO
Indiana: The Community Health Clinic in Shipshewana – Dr. Zineb Ammous, MD
- Iowa: University of Iowa in Iowa City — Dr. Katherine Mathews, MD
- Kansas: Kansas University Medical Center in Kansas City — Dr. Jeffrey Statland, MD
- 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
- North Carolina: Atrium Health in Charlotte – Dr. Urvi Desai, MD
Ohio: Nationwide Children’s Hospital in Columbus — Lindsay Alfono, PT, DPT, PCS
Virginia: Virginia Commonwealth University in Richmond — Dr. Nicholas Johnson, MD
Members Outside of the United States
- Denmark: Copenhagen University in Copenhagen – Dr. John Vissing, MD
- Italy: NEuroMuscular Omnicentre (NEMO) in Milano – Dr. Valeria Sansone, MD
- Netherlands: Leiden University in Leiden – Dr. Erik Niks, MD
- New Zealand: University of Auckland in Grafton, Auckland – Dr. Richard Roxburgh
- United Kingdom: Newcastle University in Newcastle upon Tyne — Dr. Jordi Diaz-Manera, MD
To learn more about GRASP and their active studies, visit the MDCRN website
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