Vision - Decrease the clinical impact of neurofibromatosis

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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 3500 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 August 2019:
The last several projects that were recommended for funding with fiscal year 2018 (FY18) funds are almost ready to start, and we have several exciting projects already open. We had three Early Investigator Research Award and five New Investigator Award recipients from FY18! Our team is very happy to be working with these researchers as they start their careers in NF research. Please be on the lookout for highlights about our EIRA and New Investigator Award recipients. The review cycle is gearing up for the FY19 proposals, and we are looking forward to reading about where the NF field is headed!

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

  • $332.9 million
  • $15 million

Funding Summary


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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, March 31, 2020