What is NF?

Neurofibromatosis (NF) refers to a group of complex genetic conditions that cause tumours to form on nerves, under the skin and deep in the body – affecting 1 in every 2,000 births or about 4 million people worldwide.

NF includes neurofibromatosis type 1 (NF1) and all types of schwannomatosis (SWN), including NF2-related schwannomatosis (NF2), formerly known as neurofibromatosis type 2.

The signs, symptoms, and management of each type of NF are different and there is no way to predict how mildly or severely someone will be impacted.

Roughly half of all cases arise in families with no history of NF and it can affect anyone regardless of ethnicity, gender, or family history

NF can lead to a range of significant health issues including blindness, deafness, bone abnormalities, disfigurement, chronic pain, learning difficulties and even cancer.

There are more than 13,000 people living with NF in Australia. It is unpredictable, progressive and there is no cure.