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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 those diseases.

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More NF Stories

Storyboards

The NFRP has developed storyboards depicting key advances in NF1 and NF2 basic and clinical research. Each storyboard provides a graphic representation of particular research areas such as cellular biology or experimental therapeutics. Major breakthroughs in each research area are displayed on a timeline from 1998 through 2009.

NF1 Story Board (Adobe PDF file) NF2 Story Board (Adobe PDF file)

Neurofibromatosis (NF) includes two distinct genetic disorders of the nervous system, NF1 and NF2. These disorders usually result in tumors involving nerves anywhere in the body; however, nonnervous tissue such as bone and skin can also be affected. Together, these two genetic disorders affect more than 100,000 Americans of both genders and all ethnic groups. NF1 and NF2 are usually inherited as autosomal dominant disorders. Therefore, a parent with NF has a 50 percent chance of passing on the disorder to his or her child. However, 30 percent to 50 percent of NF1 and NF2 cases arise as a result of a spontaneous genetic change. Tumors that develop in individuals with NF can cause disfigurement, deafness, blindness, bone deformation, learning disabilities, and in some cases death. The tumors that appear in NF patients can vary significantly, even among affected individuals in the same family. Surgical intervention can provide palliative relief; however, at this time there is no cure.

Congressional Appropriations

Congressional Appropriations

  • $230.05 million in FY96-11
  • $12.8 million in FY12
Funding Summary

Funding Summary