Neurofibromatosis

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Spine tumor experts Ilya Laufer and Mark Bilsky

MSK's multidisciplinary Neurofibromatosis Clinic specializes in caring for people with NF-associated tumors. Shown here: Neurosurgeons Ilya Laufer (left) and Mark Bilsky are world-renowned experts in removing tumors from delicate areas such as the spine.

Multidisciplinary NF Clinic

MSK’s Neurofibromatosis Clinic offers personalized care from a team of experts that includes neurologists, neurosurgeons, pain management specialists, and more. Our patients include adults and children with NF1, NF2, and schwannomatosis. Because our team works so closely together, we are able to provide patients with the most coordinated care possible.

Call us directly at 866-886-9807 to make an appointment.

Neurofibromatosis is a genetic condition that makes people more likely to develop tumors. These tumors are primarily in the brain, spinal cord, and peripheral nerves (the nerves that control sensation, movement, and motor coordination). Many of these tumors are noncancerous. Some cause significant disability, and some are life-threatening.

Because neurofibromatosis can affect many different areas of the body, the condition is best treated by a multidisciplinary team. At Memorial Sloan Kettering, the Neurofibromatosis Clinic brings together neurologists, neurosurgeons, medical oncologists, ophthalmologists, surgical oncologists, orthopaedic surgeons, pain management doctors, physiatrists, and genetic counselors. These specialists are committed to providing state-of-the-art care for adults and children with tumors caused by neurofibromatosis.

Types of Neurofibromatosis

Neurofibromatosis is a general term used to refer to three disorders:

The genetic causes are different for each. All three can be inherited, but they can also occur in people without a family history.

Some people with neurofibromatosis develop a large number of tumors, while others do not. The number and location of the tumors that develop depends on which type of neurofibromatosis you have and the genetic characteristics of the disease. If it is unclear which group you fall into, genetic testing may be able to help. Learn more about genetic testing and counseling at Memorial Sloan Kettering.

Why Choose MSK for Neurofibromatosis Care?

Often, our patients are able to see multiple specialists — a neurologist, a neurosurgeon, pain management specialists, and others — all in one visit to our biweekly Neurofibromatosis Clinic at Memorial Sloan Kettering’s main location on Manhattan’s Upper East Side. This approach spares our patients the inconvenience of having multiple appointments with the different specialists involved in their care.

MSK patients receive personalized care from a multidisciplinary group of experts who specialize in neurofibromatosis. We work closely together and meet every other week to discuss individual cases and how to provide each patient with the best possible care.

Most of the time our approach to care involves monitoring tumors using highly advanced imaging technology while managing pain, neurologic problems, and other symptoms. Sometimes surgery is an important part of care. MSK surgeons are among the most skilled in the world. We routinely care for people with complex tumors involving the brain, spinal cord, and peripheral nerves, as well as the rest of the body. We use the latest technology, including robotic surgery, as well as minimally invasive approaches whenever possible. MSK patients have immediate access to these experts. 

Neurofibromatosis Clinical Trials and Research

MSK participates in the Neurofibromatosis Clinical Trials Consortium (NFCTC). This group gives people with neurofibromatosis access to a wide array of ongoing research studies focused on preventing or treating complications associated with the disorder. We work closely with the Children’s Tumor Foundation to conduct research and connect people with support services.

For people with certain types of tumors, we may be able to identify the best treatment by using a genome-sequencing test developed at MSK known as MSK-IMPACT™. This test allows doctors to quickly find out whether a tumor has genetic changes that make it vulnerable to particular drugs. MSK patients can then be matched to the available therapies or clinical trials that will most benefit them.

The Neurofibromatosis Clinic also collaborates closely with several labs at Memorial Sloan Kettering that are doing neurofibromatosis-related research. For example, Luis Parada, Director of MSK’s Brain Tumor Center, is developing drugs to treat tumors associated with neurofibromatosis, including gliomas, neurofibromas, and malignant peripheral nerve sheath tumors. Ping Chi, of the Human Oncology and Pathogenesis Program, is studying the genetic and epigenetic changes that lead to the formation of these tumors. Translating their discoveries into patient care is one of the Neurofibromatosis Clinic’s main goals.