UF Health Center of Pediatric Neuromuscular and Rare Diseases
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The UF Health Center of 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, general pediatrics, neurology, pulmonary and occupational and physical therapies.
The UF Health Center of 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 in the UF Health Medical Plaza building located in Gainesville, Florida.
About Us
The UF Health Center of 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 the UF Health system and the surrounding communities, as well as directly from the Muscular Dystrophy Association office located in Jacksonville, Florida.
Any patient who has a neuromuscular disease and would benefit from interdisciplinary care is welcomed into the center. We welcome patients from all over the southeastern United States.
Our Staff
When you are a patient at our clinic, our multidisciplinary team works together to offer quality care for all of our patients.
- Bobby Ross – Program Assistant
- Megan Lee – Clinical Assistant
- Sarah Russ – Social Worker
- Tina Cousins – ECHO Tech
- Heather Simpson – Occupational Therapist
- Jennifer Wood – Physical Therapist
Research
Finding better ways to treat patients with Neuromuscular and Orphan Diseases is a major goal for the center. Research is ongoing and, to date, has focused on:
- Understanding the pathophysiology of inherited cardioskeletal myopathies and therapeutic strategies using gene therapy
- Characterization of gene mutation in inherited neurological diseases
- Muscle rehabilitation and magnetic resonance imaging
- Development of complement treatment strategies to promote recovery after spinal cord injury
- Examine the impact of glycogen accumulation in the brain and spinal cord on the neural control of the respiratory muscles
- Development of translational noninvasive imaging techniques for clinical applications
Links and Resources
- Muscular Dystrophy Association (MDA): The MDA is the nonprofit health agency dedicated to curing muscular dystrophy, ALS and related diseases by funding worldwide research. The Association also provides comprehensive health care and support services, advocacy and education.
- The Duchenne Connect website
- Know Your Duchenne
Photos
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 of 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.