Pediatric Care Center

Center for Pediatric Neuromuscular and Rare Diseases at the University of Florida

Joey’s Wings Foundation's oragami crane display at the UF Health Shands Children’s Hospital UF Health Shands Children’s Hospital.

The multidisciplinary Center for Pediatric Neuromuscular and Rare Diseases is a collaborative effort between two colleges and seven divisions or departments at the University of Florida. Five providers have formed a clinical care group to coordinate care for patients with neuromuscular and orphan diseases in need of multidisciplinary care at a single site of service. Clinical services are enhanced by leading research in the field of pediatric neuromuscular diseases, including muscular dystrophy and pompe disease.

Referrals to the center come from throughout the UF Health system and the surrounding communities, and as well as directly from the Muscular Dystrophy Association office located in Jacksonville, Florida.

Any patient who has a neuromuscular disease and would benefit interdisciplinary care is welcomed into the center. We welcome patients from all over the southeastern United States. Following are diseases for which we currently provide patient care:

  • Barth Syndrome
  • Becker muscular dystrophy
  • Cardiomyopathy
  • Centronuclear myopathies
  • Congenital muscular dystrophy
  • Distal muscular dystrophy
  • Duchenne muscular dystrophy
  • Emery-Dreifuss dystrophy
  • Facioscapulohumeral muscular dystrophy
  • Friedreich’s ataxia
  • Limb-girdle muscular dystrophies
  • Muscular dystrophy
  • Myotonic dystrophy
  • Myotubular myopathy
  • Pompe Disease

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For information about carrier testing please ask your primary care doctor or one of our clinic providers about Horizon Natera Carrier Screen. Please click below to get redirected to the Horizon Natera webpage:

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