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Neurocutaneous Syndromes

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 ֲý Children'sCenter for Cancer and Blood Disorders work closely with ֲý 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.

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Neurocutaneous Syndromes

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 ֲý Children'sCenter for Cancer and Blood Disorders work closely with ֲý 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.

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Neurocutaneous Syndromes

Why Choose Us

Our ֲý 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

Regional Care Highlights

Delaware Valley Highlights

Delaware/Greater Philadelphia

We offer complete care for kids with neurocutaneous syndromes at ֲý Children’s Hospital, Delaware (Wilmington, Del.) and outpatient appointments at select ֲý locations.

We also collaborate with the National Cancer Institute (NCI)-designated at Christiana Care (in Newark, Del.) and the at Thomas Jefferson University (in Philadelphia).

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

Florida Highlights

Central Florida

We offer care for kids with neurocutaneous syndromes atֲý Children’s Hospital, Florida(Orlando) and outpatient appointments at select ֲý locations.

We offer proton therapy as part of our collaboration with , the nation’s largest proton therapy provider and a (and the only one in the Southeast).

Northeast Florida

We offer complete care for kids with neurocutaneous syndromes atֲý Children's Health, 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 ֲý locations.

ֲý specialists provide the neurology care at the 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 , the nation’s largest proton therapy provider and a

Find Care at ֲý

We have many pediatric specialists and locations— find the care closest to you: