Neurofibromatosis

Coordinated Care for a Complex Disease

Neurofibromatosis (NF) is a congenital condition (present at birth) that can cause skin and brain tumors as well as other complications. Neurofibromatosis is not always obvious at birth, but reveals itself as the child grows. While there is no cure for neurofibromatosis, we can manage it to reduce your child's symptoms and minimize its cosmetic effects. The Neurofibromatosis Clinics at NewYork-Presbyterian Hospital provide education, support, counseling, and comprehensive care for patients and families undergoing evaluation for neurofibromatosis type 1 or 2 (NF1 and NF2) as well as those diagnosed with these disorders. Our expertise includes:

  • A Team of Specialists: Your child has access to a healthcare team that includes pediatric neurosurgeons, neurologists, cardiologists, dermatologists, endocrinologists, ENT (ear, nose, and throat) specialists, genetics experts, neuro-oncologists, neuro-radiologists, ophthalmologists, orthopedists, pathologists, plastic surgeons, and radiation oncologists. Team members have exceptional expertise caring for patients with NF1, NF2, and Schwannomatosis. All of the care your child needs can be provided in one location.
  • Genetic Counseling and Evaluation: When you bring your child to us for care, you'll meet with a genetic counselor with expertise in the care of individuals with NF. We'll take a thorough medical and family history and perform a physical examination. When necessary, we'll perform genetic testing.
  • Comprehensive Treatment: Based on the information we obtain from our evaluation, we'll develop a personalized plan of care for your child that includes the coordination of appointments with other specialists. Your child's treatment may include medications, pain management therapies, and/or surgery. Our pediatric neurosurgeons specialize in the surgical removal of painful or disfiguring tumors in patients with NF or Schwannomatosis. By providing the services of specialists from a wide range of disciplines, we ensure that your child receives the individualized treatment needed to achieve the best outcomes.
  • Guidance and Research: Patients who might transmit the NF gene and are planning a family can learn about reproductive planning options, including prenatal diagnosis and preimplantation genetic diagnosis. Our patients may also have the opportunity to participate in clinical studies.
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