Neurocutaneous Syndromes

Skip Navigation
Back to top

Neurocutaneous Syndromes


Renowned Experts in One Pediatric Health System


Neurocutaneous syndromes are rare neurologic disorders that affect the central nervous system due to tumors (cancer or non-cancer) that develop in the brain, spinal cord, organs, bones and skin. Although children are born with these syndromes, they may not be diagnosed until tumors can be seen on the skin or they cause problems with a child’s function. The oncologists (cancer doctors) in our Nemours Center for Cancer and Blood Disorders work closely with Nemours experts in neurology and orthopedics to find the cause of your child’s symptoms. Since tumors grow and change as your child develops, our experts monitor and address each issue. Although there’s no cure, our specially trained care teams are here to help your child and family as you learn to manage this lifelong condition.

Learn More About Neurocutaneous Syndromes

Types of Neurocutaneous Syndromes We Treat

Types of Neurocutaneous Syndromes We Treat


We see a full spectrum of neurocutaneous syndromes in children of all ages. The conditions we treat vary depending on the location and providers selected. Don’t see a condition listed? Call us.

  • ataxia-telangiectasia or “A-T” 
  • neurofibromatosis
  • Sturge-Weber syndrome 
  • tuberous sclerosis or “TS” 
  • von Hippel-Lindau syndrome or “VHL” 
Services We Offer for Neurocutaneous Syndromes

Services We Offer for Neurocutaneous Syndromes


We offer a variety of diagnostic and treatment services, which may vary depending on the condition or location, including:

Why Choose Us for Neurocutaneous Syndrome Care

Why Choose Us for Neurocutaneous Syndrome Care


Our Nemours Center for Cancer and Blood Disorders (or “NCCBD”) offers children renowned oncology (cancer) and neurology (brain and spinal cord) care that includes extensive experience in the these rare conditions. And since neurocutaneous syndromes can develop in many different ways as your child grows, we coordinate our care to provide a personal treatment plan for your child — not a standard, one-size approach. We also offer: 

  • continuous monitoring and follow-ups to anticipate and treat symptoms over time
  • collaborations with our affiliates for the most advanced treatment options 
  • supportive services for your child and family today, and for the long term 

Learn More About Why to Choose Us » 

Regional Neurocutaneous Syndrome Highlights

Services, programs, facilities and care teams differ at each location. Call for details.

We offer complete care for kids with neurocutaneous syndromes at Nemours/Alfred I. duPont Hospital for Children (Wilmington, Del.) and outpatient appointments at select Nemours duPont Pediatrics locations.

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).

Our Palliative and Supportive Care Program located at duPont Hospital for Children (Wilmington, Del.) provides compassionate care for families and children coping with life-threatening or life-limiting conditions.

U.S. News & World Report Best Children's Hospitals for Cancer Care 2019-20
U.S. News & World Report Best Children's Hospitals for Neurological Care 2019-20

We offer care for kids with neurocutaneous syndromes at Nemours Children’s Hospital (Orlando) and outpatient appointments at select Nemours Children’s Specialty Care locations.

We offer proton therapy as part of our collaboration 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 care for kids with neurocutaneous syndromes at Nemours Children’s Specialty Care, Jacksonville working with our affiliates Wolfson Children’s Hospital, University of Florida College of Medicine-Jacksonville, UF Health/Shands Hospital and Mayo Clinic Florida. Outpatient and follow-up appointments are 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.  

research icon

Research & Clinical Trials

At Nemours, we’re actively researching new approaches for childhood disease prevention, diagnosis and treatment.

kidshealth icon

KidsHealth Library

Learn more about your child’s medical condition from the experts at Nemours’ KidsHealth.