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 March 2019:
The NFRP Peer Review and Programmatic Review meetings have concluded, and the investigators who submitted applications for FY18 have been notified of the status of their awards. To view a list of FY18 awardees recommended for funding, please see the link in the panel on the left. We are pleased to be awarding the first recipients from our new mechanism, the Early Investigator Research Award (EIRA), which is geared towards supporting early stage investigators under the mentorship of experienced NF researchers. Please be on the lookout for highlights about our FY18 EIRA and New Investigator Award recipients.

We have released Program Announcements for FY19 awards. Please follow the link in the left panel to learn more about the available funding opportunities.

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

  • $332.9 million
  • $15 million

Funding Summary


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Last updated Friday, June 7, 2019