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 GRASP – LGMD Consortium: (Genetic Resolution and Assessments Solving Phenotypes) is a network of medical centers with significant expertise in LGMD research and clinical care. These LGMD Specialists include:

California: University of California in Irvine — Dr. Tahseen Mozaffar MD

Colorado: University of Colorado in Denver — Dr. Matthew Wicklund, MD

Florida: University of Florida in Gainesville — Dr. Peter Kang, MD

Iowa: University of Iowa in Iowa City — Dr. Katherine Mathews, MD

Kansas: Kansas University Medical Center in Kansas City — Dr. Jeffrey Statland, MD (Clinical Trial Liaison)

Maryland: Kennedy Krieger Institute in Baltimore — Dr. Kathryn Wagner, MD PhD

Massachusetts: Brigham and Women’s Hospital in Boston — Dr. Anthony Amato, 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 — Dr. Jerry Mendell, MD Linda Lowes, PT, PhD & Lindsay Alfano, DPT (Lead Clinical Evaluator)

Virginia: Virginia Commonwealth University in Richmond — Dr. Nicholas Johnson, MD (Coordinating Center)

Members Outside of the United States:

Denmark: Copenhagen University in Copenhagen Dr. John Vissing, MD

United Kingdom: Newcastle University in Newcastle upon Tyne — Dr. Volker Straub, MD and Dr. Michela Guglieri, MD

Non-Clinical Sites

Connecticut: Yale University in New Haven – Monkol Lek, PhD

Translate »