Users' questions

Where can I find a neurofibromatosis specialist in my area?

Where can I find a neurofibromatosis specialist in my area?

The Neurofibromatosis Network provides a tool for locating a neurofibromatosis specialist in your area. Click on Neurofibromatosis Network to access the tool. Research helps us better understand diseases and can lead to advances in diagnosis and treatment.

When is selumetinib approved for neurofibromatosis type 1?

FDA-approved indication: April 2020, selumetinib (Koselugo) was approved for the treatment of pediatric patients 2 years of age and older with neurofibromatosis type 1 (NF1) who have symptomatic, inoperable plexiform neurofibromas (PN).

Where to see a neurologist for schwannomas?

Schwannomas develop on the tissue that covers nerves (called the nerve sheath). 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.

How is neurofibromatosis type 1 treated in the US?

Patients and consumers with specific questions about a genetic test should contact a health care provider or a genetics professional. The treatment of neurofibromatosis type 1 (NF1) is based on the signs and symptoms present in each person. Treatment may include surgery to remove neurofibromas that are disfiguring, irritating or cancerous.

The Neurofibromatosis Network provides a tool for locating a neurofibromatosis specialist in your area. Click on Neurofibromatosis Network to access the tool. Research helps us better understand diseases and can lead to advances in diagnosis and treatment.

Are there any neuroscience specialists in South Carolina?

MUSC Health has one of the nation’s largest and most experienced teams of neuroscience specialists. Our distinction as South Carolina’s only academic medical center means our doctors offer the most advanced treatments for people with nervous system disorders.

FDA-approved indication: April 2020, selumetinib (Koselugo) was approved for the treatment of pediatric patients 2 years of age and older with neurofibromatosis type 1 (NF1) who have symptomatic, inoperable plexiform neurofibromas (PN).

Patients and consumers with specific questions about a genetic test should contact a health care provider or a genetics professional. The treatment of neurofibromatosis type 1 (NF1) is based on the signs and symptoms present in each person. Treatment may include surgery to remove neurofibromas that are disfiguring, irritating or cancerous.