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. 

Learn More About Neurofibromatosis 

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”) 

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

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.