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The UF Health Center for Pediatric Neuromuscular and Rare Diseases is founded on the philosophy that integrated, interdisciplinary care is the most effective approach for patients with neuromuscular and orphan diseases.
The Center coordinates and provides patient care, led by leading specialists from diverse medical backgrounds, in one centralized location. Today, the Center consists of a collaborative effort of specialists with backgrounds in cardiology, critical care, endocrinology, gastroenterology, general pediatrics, hematology/oncology, nephrology, neurology, occupational and physical therapy, orthopaedics, pulmonology, rheumatology and surgery.
The UF Health Center for Pediatric Neuromuscular and Rare Diseases provides patient-centric care, allowing patients to interact with all necessary medical providers in one location. This care model is designed to address as many aspects of a patient’s medical needs in a single visit. Established in 2010 as a partner with the Muscular Dystrophy Association, the Center operates weekly from our UF Health Pediatric Specialties – Medical Plaza location in Gainesville, Florida.
Research
Finding better ways to treat patients with neuromuscular diseases is one of our major goals, and we do that through research.
Learn more the Powell Center for Rare Disease Research and Therapy.
Resources
- Muscular Dystrophy Association (MDA)
- Friedreich’s Ataxia Research Alliance
- The Duchenne Registry
- Jett Foundation
- Little Hercules Foundation
- Parent Project for Muscular Dystrophy (PPMD)
- Spinal Muscular Atrophy Foundation
- Treat-NMD Neuromuscular Network
- Understanding Duchenne
- Walking Strong
- World Duchenne Organization (WDO)
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Specialties
Conditions & Services
- Barth Syndrome
- Becker muscular dystrophy
- Cardiomyopathy
- Centronuclear myopathies
- Congenital muscular dystrophy
- Distal muscular dystrophy
- Duchenne muscular dystrophy
- Emery-Dreifuss dystrophy
- Facioscapulohumeral muscular dystrophy
- Friedreich ataxia
- Limb-girdle muscular dystrophies
- Muscular dystrophy
- Myotonic dystrophy
- Myotubular myopathy
- Pompe Disease
Medical Records
To obtain a copy of your medical records from UF Health Center for Pediatric Neuromuscular and Rare Diseases, please contact 877-543-7783 (KIDS-R-UF), 352-294-5757.
Pay your bill
If you have questions or wish to pay in person, please consult our billing section.Accepted Insurance
Shands hospitals and UF Physician practices accept insurance from numerous providers, including Aetna, Blue Cross Blue Shield of Florida, CIGNA, Humana, Capital Health, United Healthcare, Medicaid, and state and government services. For a full list of accepted plans visit our Insurance / Billing page.
Insurance acceptance varies between physicians and locations and is subject to change. To confirm that a specific physician will accept your insurance, please contact the practice using the telephone numbers listed at the top of the page. A representative will be happy to assist you.
Financial Assistance
Patients who lack insurance coverage or are unable to pay their portion of the healthcare services they receive may qualify for financial assistance based upon their income level.UF Health is tobacco-free
Help us maintain our strong commitment to patients and to promoting good health in our communities: please don't smoke, chew tobacco or use electronic cigarettes on UF Health-owned or -operated properties. Thank you.