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 — Linda Lowes, PT, PhD
  • 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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