There is still no cure for NF1, or any medical or surgical treatment to reverse or prevent most related complications. This reflects our current lack of knowledge of the basic mechanisms whereby the NF1 gene mutation affects the body.

That said, scientific understanding of NF1 has entered an exciting phase of rapid progress. New research and applications in genetic techniques have led to the identification of the NF1 and NF2 genes. This discovery has already resulted in some new means of diagnosing the disorder. In addition, new animal models provide a better way to study how and why NF1 features form and a means to test potential treatments before they might be used in clinical trials on people. Researchers are gaining a better understanding of what causes neurofibromas to grow. This may enable them to develop medications that could either shrink existing neurofibromas or prevent others from growing. The animation below illustrates how neurofibromas may occur.

Researchers hope that an effective treatment or cure will result from scientific work across the country. Your physician can provide you with up-to-date information on recent progress. The National Neurofibromatosis Foundation newsletters are also a good source for the latest information. Information may also be found at the Web site for Neurofibromatosis, Inc.