Neurofibromatosis (NF) is a genetic condition (can be passed from parent to child) that causes tumors to grow on nerve cells. This leads to problems in the skin, bones, eyes and brain which can affect a child’s abilities and appearance. Although these tumors are usually benign (not cancer), treating them requires an expert team since they can develop in many ways, over a long period of time. Our specialists work together to address each issue as your child grows.
Neurofibromatosis (NF)
Experienced Specialists for Many NF Needs
Types of Neurofibromatosis We Treat
Neurofibromatosis is one of the most common neurocutaneous syndromes (tumors in the nervous system). Our experts see a full spectrum of these conditions, and treat all three types of NF, including:
- neurofibromatosis type 1 (also called “NF1” and “von Recklinghausen disease”)
- neurofibromatosis type 2 (also called “NF2”)
- neurofibromatosis type 3 (also called “NF3” and “schwannomatosis”)
Services We Offer for Neurofibromatosis
We offer a variety of diagnostic and treatment services, which may vary depending on how your child’s NF develops and which specialist your child sees, including:
- ear, nose and throat or “ENT” and balance programs for tumors that impact hearing and balance
- endocrinology to monitor hormones as kids age or for tumors on the adrenal glands (which sit on top of each kidney and make hormones)
- eye exams to monitor or treat eye tumors (glioma) or benign (noncancerous) Lisch nodules (growths on the iris)
- interventional radiology to biopsy (take a sample of) tumors
- oncology care offering the most advanced pediatric cancer treatments
- orthopedic care to check for scoliosis and treat skeletal problems as your child grows
- genetic counseling to help with diagnosis and family support
- medical imaging (radiology) tests like a CT scan, MRI or X-ray
- pain management to help with nerve pain, chronic pain or headaches
- plastic surgery to treat port-wine stains (birthmarks that look like a red wine spill) and growths that affect your child’s appearance
- psychology and psychiatry to help with ADHD and learning problems
- surgery by board-certified pediatric neurosurgeons
Why Choose Us for NF Care
At Nemours, we have the experience and the expertise to care for children with complex conditions like NF. Our medical teams will take the time to listen to your concerns and give your child personal, thorough, medical and surgical care.
Our neurologists have been recognized for advancements in treating children at our hospitals, as well as through our research. If your child needs surgery, our highly skilled neurosurgeons are experienced in performing endoscopic (minimally invasive) surgery for smaller incisions and faster healing. For kids whose tumors become malignant (cancer), our internationally recognized Nemours Center for Cancer and Blood Disorders offers state-of-the-art therapies.
Regional Neurofibromatosis Highlights
Services, programs, facilities and care teams differ at each location. Call for details.
We offer complete neurofibromatosis care for kids at Nemours/Alfred I. duPont Hospital for Children (Wilmington, Del.), named one of the best children’s hospitals in the country for neurology and neurosurgery by U.S. News & World Report.
We also collaborate with the National Cancer Institute (NCI)-designated Helen F. Graham Cancer Center at Christiana Care (in Newark, Del.) and the Sidney Kimmel Cancer Center at Thomas Jefferson University (in Philadelphia).
We offer complete neurofibromatosis care for kids at Nemours Children’s Hospital (Orlando) and outpatient appointments at select Nemours Children’s Specialty Care locations.
We’re also part of an integrated pediatric program with UF Health/Shands , the nation’s largest proton therapy provider and a State of Florida Cancer Center of Excellence (and the only one in the Southeast).
We offer complete neurofibromatosis care for kids at Nemours Children’s Specialty Care, Jacksonville and our hospital affiliate, Wolfson Children’s Hospital, with outpatient and follow-up appointments also available at select Nemours Children’s Specialty Care locations.
Nemours specialists provide the neurology care at the Stys Neuroscience Institute at our affiliate, named one of the best children’s hospitals in the country for neurology and neurosurgery by U.S. News & World Report.
We’re also part of an integrated pediatric program with UF Health/Shands , the nation’s largest proton therapy provider and a State of Florida Cancer Center of Excellence (and the only one in the Southeast).
Research & Clinical Trials
At Nemours, we’re actively researching new approaches for childhood disease prevention, diagnosis and treatment.
KidsHealth Library
Learn more about your child’s medical condition from the experts at Nemours’ KidsHealth.