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) Neurofibromatosis Type 1 or NF1 affects 1 in 3500 people worldwide and is caused by a mutation in the neurofibromin gene, 2) Neurofibromatosis Type 2 or 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 2020 – With award negotiations complete, we are happy to announce that NFRP utilized 5 different award mechanisms to fund 21 research projects for FY2019! Like the rest of the world, the research community has had to adapt and change for COVID-19 precautions and guidelines but our funded PIs are moving forward and starting their important and exciting NF research. Meanwhile, NFRP has moved onto the next cycle of award funding; we have just completed the Peer Review of CDMRP’s two-tiered review process of the proposed FY20 projects. We look forward to announcing the funding decisions from Programmatic Review in early 2021. 

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

  • $347.9 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, January 19, 2021