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 August 2018:
The last few projects that were recommended for funding for fiscal year 2017 are in the process of being awarded, and we are pleased that we were able to also fund additional projects from cost savings. We are currently gearing up for the fiscal year 2018 review cycle, and are looking forward to the exciting research to be proposed!
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.