Our team of experts offers treatment for the diverse symptoms of neurofibromatosis and schwannomatosis.
NYU Langone’s Comprehensive Neurofibromatosis Center offers individualized medical and surgical care for patients with neurofibromatosis (NF) types 1 and 2 and schwannomatosis.
NF1, NF2, and schwannomatosis are distinct genetic or hereditary conditions that cause usually benign tumors on peripheral or cranial nerves. These tumors can also appear in or outside the brain. The complexities of these conditions warrant a diverse team of medical specialists who can identify the disorders and help you manage the challenges that result from these conditions and their treatments. At our center, you have access to a network of specialists who can address your entire condition.
Your First Appointment
When you first make contact with us, our nurse coordinator conducts a phone evaluation to determine which of our physicians is best matched to your specific condition. All prior imaging and medical records are requested. A social worker may contact you to identify any special needs you have or resources you may need.
During your first appointment, we conduct a medical examination that may include additional tests, scans, and referrals to specialists such as a behavioral and learning specialist, dermatologist, genetic counselor, neurosurgeon, orthopaedist, otolaryngologist, audiologist, or plastic surgeon.
Our Treatment Program
Pediatric patients with NF1 are initially evaluated at the Stephen D. Hassenfeld Children’s Center for Cancer and Blood Disorders, where we have access to specialists in neurology, neuropsychology, nutrition, social services, education, and oncology. Older patients with NF1 and NF2 are initially evaluated by adult specialists either at Hassenfeld Children’s Center or elsewhere within NYU Langone.
We take an extensive medical history and conduct physical and neurological examinations. You might also be referred for genetic testing or initial imaging tests. We then refer you to the appropriate medical and surgical specialists. Short-term interventions are arranged if needed, and a long term follow-up plan is devised for each patient.
All people with NF2 are counseled on surgical treatment for their tumors. We also discuss ways we can preserve or restore hearing, including hearing aids and implantable hearing devices such as cochlear or brainstem auditory implants. Services for voice, swallowing, balance disorders, tinnitus, and other issues related to cranial nerve dysfunction are also available.
If you have a complex form of NF, referrals can be made to our experts in peripheral nerve tumors. This group of specialists in head and neck surgery, plastic surgery, orthopaedic surgery, and neurosurgery handles the removal of slow-growing, low-grade tumors and malignant tumors of the peripheral nervous system.
Tumor care is provided by our team of pediatric and medical oncologists, radiation oncologists, and surgeons affiliated with the Laura and Isaac Perlmutter Cancer Center. Patient and family support groups and individual counseling are provided by our nursing, behavioral, and social work teams.
We are also committed to research into better and safer treatments for patients experiencing the progressive manifestations of NF, especially the tumors of the nervous system. We are the first program in the New York metropolitan area to receive the Affiliate Clinic designation from the Children’s Tumor Foundation. We are also a part of a national and international network of clinics working to establish a patient registry and clinical trials consortium.
We are proud to announce that the Comprehensive Neurofibromatosis Center is the only New York member of the NF Consortium, which conducts clinical trials for NF treatments. We are conducting our own clinical trials with molecular targeted drugs in NF2 patients with progressive vestibular schwannomas, including those at risk for hearing loss.
Stephen D. Hassenfeld Children’s Center for Cancer and Blood DisordersOur world leaders in pediatric cancer care help treat children with neurofibromatosis 1 and 2 and schwannomatosis.
Doctors at the Comprehensive Neurofibromatosis Center come from a range of specialties including oncology, neurosurgery, and otolaryngology.Meet Our Doctors
Jeffrey C. Allen, MD
Mark D. DeLacure, MD
John G. Golfinos, MD
Matthias A. Karajannis, MD
Sean O. McMenomey, MD
J. Thomas Roland Jr., MD
Allan E. Rubenstein, MD
Chandra Sen, MD
Kaleb H. Yohay, MD
Plan Your Visit
Comprehensive Neurofibromatosis Center
160 East 32nd Street
New York, NY 10016