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DEPARTMENT OF WAR - CONGRESSIONALLY DIRECTED MEDICAL RESEARCH PROGRAMS
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  3. Neurofibromatosis

Neurofibromatosis

Vision – Decrease the clinical impact of neurofibromatosis

Mission – 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

Neurofibromatosis Research Program Summary Sheet Cover Image
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Neurofibromatosis Research Program Strategic Plan Cover Image
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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 September 2025 – FY24 Neurofibromatosis Research Program award negotiations are complete. Amongst these FY24 awards are three New Investigator Awards that we are thrilled to help to get established in the NF field. The NFRP also announces the funding of five 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 FY24 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 Icon

Congressional Appropriations

  • $452.9 million
    FY96-24

Funding Summary Icon

Funding
Summary

Programmatic Panels Icon

Programmatic
Panels

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Peer Review Participants

NFRP Supported Initiatives

Related Videos

Dr.Vincent Riccardi

The Neurofibromatosis Institute
Gaining Momentum Through Innovation and Recruitment

[Click on image to watch on YouTube]

Dr. Douglas Miller

University of Missouri School of Medicine
Confronting the Challenge of Neurofibromatosis

[Click on image to watch on YouTube]

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Last updated Tuesday, October 28, 2025