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 May 2020 – We are hard at work getting the fiscal year 2019 (FY19) awards made. We have a great group of PIs this year (of course, we say that every year)! We had four Early Investigator Research Award and six New Investigator Award recipients recommended for funding in FY19! Be on the lookout for more about these recipients in coming months.

Despite COVID-19, the NF research community is marching forward. In April, the community saw a major step, the first FDA-approved drug for treatment in NF1, and just in time for NF Awareness Month in May. The NFRP has also released Program Announcements for FY20. Pre-applications are due in June, so spread the word!

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 Friday, July 10, 2020