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 March 2021 – FY20 Neurofibromatosis Programmatic Review is complete and we are excited to be negotiating the new research grants! Included in these awards are several Early Investigator Research Awards and we are thrilled to help these new early-stage researchers establish their presence and work in the NF field. We are also negotiating our first Synergistic Idea award, an award mechanism aimed at encouraging multiple researchers to collaborate and address a central NF problem through complementary and synergistic techniques and perspectives. We look forward to the exciting research and data that will come from these new FY20 NF projects.

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 Sunday, December 31, 1600