About Neurofibromatosis (NF)

Neurofibromatosis (NF) is a set of distinct genetic disorders that cause tumors to grow along the outside of nerves and, in addition, can affect the development of other tissues such as bones and skin. NF causes tumors to grow anywhere on or in the body.

The disease affects roughly one in every 3,000 people, making NF more prevalent than Cystic Fibrosis, hereditary Muscular Dystrophy, Huntington's Disease and Tay Sachs combined.

The three distinct classifications of NF are NF1, NF2 and Schwannomatosis. Schwannomatosis has only recently been recognized as a subtype of NF and appears to affect one out of 40,000 individuals.

The condition is marked by tumors that originate on the covering of nerves. The tumors remain on the outside of the nerve but may push it aside or against a bone, causing damage and severe pain. To date, there is no cure for this genetic disorder. As a result, surgically removing tumors and pain management may be a patient's only option.