To support neurofibromatosis sufferers and their carers by bringing families and individuals together and to promote awareness within the community, particularly amongst medical practitioners.
Neurofibromatosis (NF) is one of the most common genetic conditions and can affect anyone, regardless of family history, race, gender, or ethnic background.
There are three types of NF, type 1 (NF1), type 2 (NF2), and the lesser known Schwannomatosis. NF1 affects approximately one out of every 3-4,000 individuals. NF2 and Schwannomatosis affect one out of every 35-40,000 individuals.
NF is characterized by the growth of benign tumours called neurofibromas. These tumours can grow anywhere in the body where there are nerve cells. This includes nerves just under the surface of the skin, as well as nerves deeper within the body, spinal cord, and/or brain.
In NF1, neurofibromas most commonly grow on the skin or on the nerve to the eye. A tumour which grows on the nerve to the eye is called an optic glioma and, if it grows large enough, can cause problems with vision, including blindness.
In NF2, neurofibromas most commonly grow within the spinal cord or brain. Specifically, the tumours are found on the nerves to the ear, called acoustic neuromas, or the nerves for balance, called vestibular schwannomas. Acoustic neuromas, if large enough, can lead to deafness.