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 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 August 2016:
The last few projects that were recommended for funding for fiscal year 2015 are in the process of being awarded, and we are pleased that we were able to also fund additional projects from cost savings. We are currently gearing up for the fiscal year 2016 review cycle. Proposals have come in, and we are looking forward to reading about the innovative ideas and concepts being developed in the Neurofibromatosis field.

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

  • $287.9 million
  • $15.0 million

Funding Summary


NFRP Supported Initiatives

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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 those diseases.

Last updated Thursday, February 23, 2017