Vision - Decrease the clinical impact of neurofibromatosis

Neurofibromatosis Cover Image

» Click on Image to View Program Booklet

Neurofibromatosis (NF) is a group of three genetically distinct disorders that cause tumors to grow in the nervous system. It also produces other abnormalities in the skin and bones. There are three types of NF: 1) NF 1 affects 1 in 3,500 people worldwide and is caused by a mutation in the neurofibromin gene, 2) NF2 affects 1 in 25,000 people and is caused by mutations in the Merlin gene, 3) Schwannomatosis is much rarer, affecting 1 in 40,000 people, and although mutations in the SMARCB1/INI1 gene have been associated with the disease, we do not fully understand the underlying cause to many of the symptoms of the disorder. The Neurofibromatosis Research Program (NFRP) was established in 1996 when the efforts of NF advocates led to a congressional appropriation to fund research in NF.

Updated October 2017:
The investigators funded through the NFRP have had a busy summer! We have seen several publications come out from work funded by past and current awards, and anticipate several more in the coming months. All of the NFRP FY16 awards have been made, and the research teams are hard at work on the projects. The NFRP Program Team is excited to see what comes from the new batch of awards! We are currently in the process of reviewing applications to the FY17 Program Announcements, and funding decisions will be announced in January/February of 2018.

Please follow the links in the left panel of this page to visit some highlights and efforts by the NFRP and those that support it. Additional information regarding resources funded by the NFRP available to all researchers, and our program history can also be found on this page.

Congressional Appropriations

Congressional Appropriations

  • $302.9 million
  • $15.0 million

Funding Summary


NFRP Supported Initiatives

news_icon News & Highlights


Decrease the clinical impact of neurofibromatosis


Promote research directed toward the understanding, diagnosis, and treatment of NF1, NF2 and schwannomatosis to enhance the quality of life for persons with these disorders that impact Service members, Veterans, and the general public

Last updated Tuesday, January 30, 2018