Neurofibromatosis
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
- $402.9 million
FY96-22 - $25 million
FY23
Funding
Summary
- 471 Awards in FY96-21
- Recent Applications Recommended for Funding
Programmatic
Panels
Peer Review Participants
NFRP Supported Initiatives
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News & Highlights
- NFRP Supports
Multi-Institutional Synergistic Idea Award to Investigate Inflammation DuringNF-Related Optic Tumor Formation - NFRP Funds First Research OTA to Support Neurofibromatosis Clinical Trials
- Neurofibromatosis Research Program (NFRP) Research Resources
- Genetic Risk Factors of Schwannoma Tumors
- Helga Pavlicek – NFRP Consumer Reviewer
- FY21 NFRP Recommended for Funding List
- Pharmacological Alk Inhibition Impacts Behavior and Cognition in Adult NF1 Mutant Mice
- Hannah Kim – NFRP Consumer Reviewer
- Research Resources
- NFRP Supported Clinical Trials
- Clinical Trials Consortium
- NF Accomplishments (Adobe PDF file)
- NFRP Program Summary Sheet
- More…
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
Last updated Sunday, December 31, 1600