In the last five years researchers have been able to discover the two genes causing NF and the gene products encoded by the genes. Both NF1 and NF2 are genetically determined disorders that affect more than 100,000 Americans making NF more prevalent than Cystic Fibrosis, hereditary Muscular Dystrophy, Huntington's Disease and Tay Sachs combined. Neurofibromatosis, Inc., is a nonprofit organization that provides individuals and families affected by neurofibromatosis and related disorders information on the disease, referrals to physicians and other service providers, and peer counseling. The organization also serves professionals and will respond to mail, telephone, and in-person inquiries. A 24-hour message line is available, and service is extended through the weekend with the help of volunteer staff.
Some publications are available in Spanish.
The organization also promotes and supports research in Neurofibromatosis and related conditions.