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(Learn more at GRASP-LGMD.ORG

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  Phone: (714)-456-2525

Colorado: University of Colorado in Denver — Dr. Matthew Wicklund, MD Phone: (303)-724-6386

Florida: University of Florida in Gainesville — Dr. Peter Kang, MD  Phone: (352) 627-9322

Iowa: University of Iowa in Iowa City — Dr. Katherine Mathews, MD  Phone: (319)-356-2673

Kansas: Kansas University Medical Center in Kansas City — Dr. Jeffrey Statland, MD (Clinical Trial Liaison) Phone: (913)-588-6970

Maryland: Kennedy Krieger Institute in Baltimore — Dr. Kathryn Wagner, MD PhD Phone: (443)-923-9525

Massachusetts: Brigham and Women’s Hospital in Boston — Dr. Vijay Ganesh, MD Phone: (617)-732-8046

Missouri: Washington University in St. Louis — Dr. Conrad Weihl, MD, PhD (Biobank) Phone: (314)-362-6981

North Carolina: Atrium Health in Charlotte – Dr. Urvi Desai, MD Phone: (704)-446-1900 

Ohio: Nationwide Children’s Hospital in Columbus — Dr. Jerry Mendell, MD Linda Lowes, PT, PhD & Lindsay Alfano, DPT (Lead Clinical Evaluator)  Phone: (614)-722-6881

Virginia: Virginia Commonwealth University in Richmond — Dr. Nicholas Johnson, MD (Coordinating Center) Phone: (804)-552-0014

Members Outside of the United States:

Denmark: Copenhagen University in Copenhagen Dr. John Vissing, MD  Phone:+45 35452562/1842

United Kingdom: Newcastle University in Newcastle upon Tyne — Dr. Volker Straub, MD and Dr. Michela Guglieri, MD  Phone: + 0191 241 8649

Non-Clinical Sites

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


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