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 2023 – FY22 Neurofibromatosis Research Program award negotiations are complete. We are excited to announce the newly supported projects and look forward to seeing the impactful discoveries that will result from these investigators that are new to NF field. Amongst these awards are 6 New Investigator Awards that we are thrilled to help to get established in the NF field. The NFRP also announces the funding of three Synergistic Idea Awards (SIA) which will involve the combined effort of ten investigators. The SIA mechanism is aimed at encouraging multiple researchers to collaborate and address a central NF problem through complementary and synergistic techniques and perspectives. We look forward to reporting the accomplishments and impactful outcomes to come from these FY22 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 Wednesday, June 12, 2024