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Duke neurofibromatosis experts provide comprehensive medical and surgical care to children, adolescents, and adults with all forms of neurofibromatosis including NF1, also called Von Recklinghausen’s disease, a rare form called NF2, and schwannomatosis. We help control your pain and lead a normal life.

Expert care for neurofibromatosis

Neurofibromatosis is a genetic disorder that causes tumors to grow in nerve tissue in the skin, brain, and spinal cord. While the tumors are typically not cancerous, they can cause several complications including hearing and/or vision loss, learning disabilities, and severe pain. Our team includes a range of specialists who work together to treat the symptoms and complications of neurofibromatosis, including disfigurement.

Most cases of NF1 - the most common form of neurofibromatosis - appear in children before the age of 10. Because your child’s symptoms may evolve over time, we develop a close relationship and monitor your child, so we detect changes and quickly respond to any complications that arise. While there is no cure for neurofibromatosis, our treatments control pain and help you or your child lead a normal life.

Choose Duke for your neurofibromatosis care because we offer:

  • A team of specialists. Your care team includes neurologists, neuro-oncologists, medical geneticists, neurosurgeons, ophthalmologists, neuro-otologists, plastic surgeons, cardiologists, learning disabilities specialists and physical therapists. We work together to address the complications associated with neurofibromatosis.
  • Pediatric and adult expertise. Our team works in seamless collaboration with our pediatric specialists to make sure you or your child receive age-appropriate care. We understand the important differences in this disease at different ages. Neurofibromatosis is often detected in childhood, but some cases can be diagnosed in your 20s and 30s.
  • Clinical trial access. You may have be eligible to participate in our clinical trials and research studies that give you access to experimental therapies before they become widely available.



In addition to a physical exam and family history evaluation, your doctor may order one of the following tests:

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