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Decrease the clinical impact of neurofibromatosis


Promote research directed toward the understanding, diagnosis, and treatment of NF1, NF2 and schwannomatosis to enhance the quality of life for persons with those diseases.

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 3500 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.

Update July 2015:
The NFRP, established in 1996, has been hard at work the past few months working with scientists and clinicians in funding and supporting new NF research with Fiscal Year (FY) 14 Congressional Appropriations of $15million. Through the work of the NFRP and different NF advocate groups, NF awareness continues to spread, making the advocates' plea to US Congress for continued funding in NF research a more manageable task.

This past June, many of our NFRP-funded research projects were presented at the Children's Tumor Foundation NF Conference in Monterey, California. Scientists and clinicians were able to share their clinical experiences and research advances in a combined collaborative effort to identify effective treatments for NF, investigate new potential targets for future therapeutics, and improve the quality of life for those living with NF.

The CDMRP will continue to do its part to find and fund the best research in NF and support novel ideas by both new and renowned researchers. By working together, the NFRP and consumer advocates have made measureable strides in advancing research to help us all better understand and treat NF and its many manifestations. We have a long fight ahead of us in this battle against NF, but our commitment remains strong.

Please follow the links in the right panels 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 be found on this page.

NFRP Supported Initiatives

NFRP Supported Initiatives

Congressional Appropriations

Congressional Appropriations

  • $272.85 million FY96-FY14
  • $15.0 million FY15
Funding Summary

Funding Summary

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