Uno de los retos de vivir con una enfermedad rara como la distrofia muscular de cinturas (LGMD) es encontrar médicos y otros especialistas sanitarios que conozcan bien el proceso de la enfermedad.
GRASP - Consorcio LGMD
En Genetic Resolución y 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. Sub Subramony, MD
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
Carolina del Norte: 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
Miembros fuera de Estados Unidos
- Dinamarca: Universidad de Copenhague en Copenhague - Dr. John Vissing, MD
Italia: NEuroMuscular Omnicentre (NEMO) in Milano – Dr. Valeria Sansone, MD
- Países Bajos: Universidad de Leiden en 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
Para saber más sobre GRASP y sus estudios activos, visite la MDCRN sitio web
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