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 2021 – With award negotiations complete, we are happy to announce that NFRP utilized 6 different award mechanisms in FY2020 to fund 21 research projects! Excitingly, a number of the new FY20 awards fund innovative, high-risk, high-gain projects through the Exploration-Hypothesis Development award mechanism. NFRP has moved onto the next cycle of award funding. We have just completed the Peer Review, the first tier of CDMRP’s two-tiered review process, of the proposed FY21 projects. We look forward to announcing the funding decisions from Programmatic Review in early 2022.

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

  • $402.9 million
  • $25 million

Funding Summary


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Last updated Friday, September 22, 2023