Neurofibromatosis Clinic

Neurofibromatosis is a genetic condition that makes people more likely to develop tumors, primarily involving the brain, spinal cord, and peripheral nerves. While many of these tumors are noncancerous, some cause significant disability and some are life threatening. 

Because neurofibromatosis affects the entire body, the condition is best treated by a multidisciplinary team of specialists. At Memorial Sloan Kettering, our Neurofibromatosis Clinic consists of neurologists, medical oncologists, ophthalmologists, neurosurgeons, surgical oncologists, and pain management physicians, all committed to providing state-of-the-art care for the tumors caused by these diseases.

To schedule an appointment, call the Neurofibromatosis Clinic at 866-886-9807 between 9:00 am and 5:00 pm, ET, Monday through Friday.

Types of Neurofibromatosis

There are three types of neurofibromatosis: neurofibromatosis type 1, neurofibromatosis type 2, and schwannomatosis. Each type has a unique genetic cause and lead to the formation of different tumors types. All three conditions can be inherited, but can also occur in individuals without a family history.

Some neurofibromatosis patients develop a large number of tumors, while others do not. The number and type of tumors that develop will depend on which type of neurofibromatosis you have as well as the genetic characteristics of your 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. 

Neurofibromatosis Type 1 (NF1)

NF1 is one of the most common genetic conditions, affecting 1 in 3,000 people. People with NF1 have a predisposition for developing the following types of tumors:

Neurofibromas of the skin (cutaneous neurofibromas)

Neurofibromatosis Type 2 (NF2)

NF2 is less common than NF1, and is associated with a different spectrum of tumors, including: 

  • Schwannomas, mostly involving the vestibulocochlear nerve — the nerve that controls balance and hearing
  • Meningiomas
  • Ependymomas  

Schwannomatosis

Like NF2, schwannomatosis is a rare condition that predisposes individuals to schwannomas, a type of nerve sheath tumor that can be painful. Unlike NF2, it rarely causes meningiomas.

Neurofibromatosis Treatment

All types of neurofibromatosis can cause pain and neurologic problems, as well as life-threatening complications. At MSK, neurofibromatosis care is a team effort, bringing together neurologists, oncologists, neurosurgeons, radiation oncologists, and radiologists who work closely together and confer on a regular basis.

In most cases, we will monitor the tumors using the most advanced imaging technology available while managing symptoms. In some instances, surgery is an important part of care. MSK surgeons routinely manage complex cases involving the brain, spinal cord, peripheral nerves, and the rest of the body. Our clinic provides immediate access to these experts. 

Clinical Research

For people with certain types of tumors, we may be able to identify molecular targets using a genome-sequencing test developed at MSK known as MSK-IMPACT.  Several clinical trials at MSK are enrolling patients on an ongoing basis using molecular information identified by this test.

The clinic is further supported by various research programs at Memorial Sloan Kettering.  At our Brain Tumor Center, director Luis Parada is developing novel drugs for the treatment of 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 to patient treatment is an objective of the Neurofibromatosis Clinic. 

Neurofibromatosis Experts

Select from the list below to learn more about our specialists, their education, training, board certifications, current publications, and specific areas of clinical expertise.

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MSK neuro-oncologist Andrew Lin

Andrew Lin

MSK neuro-oncologist Anna Piotrowski

Anna F. Piotrowski

Director of Medical Student Education, Department of Neurology

Jacqueline B. Stone, MD

Jacqueline B. Stone

Director of Resident Education, Department of Neurology

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Matthias A.  Karajannis, MD, MS

Matthias A. Karajannis

Chief, Pediatric Neuro-Oncology Service

Yasmin Khakoo, MD

Yasmin Khakoo

Child Neurology Program Director

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Pictured: Ping Chi

Ping Chi

Geoffrey Beene Junior Faculty Chair

Mary Louise Keohan, MD

Mary Louise Keohan

William D. Tap, MD -- Section Chief, Sarcoma Oncology, Melanoma and Sarcoma Service

William D. Tap

Chief, Sarcoma Medical Oncology Service

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Memorial Sloan Kettering neurosurgeon Ori Barzilai

Ori Barzilai

Mark H. Bilsky, MD

Mark H. Bilsky

William E. Snee Endowed Chair; Vice Chairman of Clinical Affairs, Neurosurgery; Chief, Multi-Disciplinary Spine Tumor Service

Cameron W. Brennan, MD

Cameron W. Brennan

Ilya Laufer, MD

Ilya Laufer

Neurosurgeon and Director of the Minimally Invasive Spine Tumor Surgery Program; Co-Director, Neuro Advanced Care Unit

Mark Souweidane

Mark M. Souweidane

Memorial Sloan Kettering neurosurgeon Viviane Tabar

Viviane Tabar

Chair, Department of Neurosurgery; Theresa Feng Chair in Neurosurgical Oncology

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Memorial Sloan Kettering sarcoma expert Aimee Crago

Aimee M. Crago

Samuel Singer, MD, FACS -- Chief, Gastric and Mixed Tumor Service

Samuel Singer

Chief, Gastric and Mixed Tumor Service; Vincent Astor Chair of Clinical Research

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Memorial Sloan Kettering medical oncologist Mark Robson

Mark E. Robson

Chief, Breast Medicine Service

Pictured: Michael Walsh

Michael F. Walsh