Schwannomatosis is an umbrella term encompassing multiple forms of Schwannomatosis in which affected individuals develop benign tumors associated with nerves (schwannomas). Schwannomatosis is the least common form of NF, with no clear genetic inheritance pattern. Subtypes of Schwannomatosis include:

  • NF2-Schwannomatosis
  • SMARCB1-related schwannomatosis
  • LZTR1-related schwannomatosis
  • 22q-related schwannomatosis
  • Schwannomatosis NOS
  • Schwannomatosis NEC

Some forms of Schwannomatosis affect 1 in 20,000 individuals, whereas other subtypes affect only 1 in 70,000. There is currently no cure for Schwannomatosis; however, surgical intervention to remove schwannomas is possible. Research into the causes of these tumors has resulted in new medical treatments offered as part of clinical trials.

Schwannomatosis Clinical Program

This multidisciplinary Washington University NF Center program specializes in treating patients with NF2-Schwannomatosis/Schwannomatosis.