Dialog Box


Neurofibromatosis (NF) is a complex genetic condition that causes tumours to form on nerves, under the skin and deep in the body. 

A single gene change can cause a lifetime of tumours

Progressive and unpredictable, NF can lead to a range of significant health issues including blindness, deafness, bone abnormalities, chronic pain, learning difficulties and in some cases, cancer.

NF can affect anyone regardless of ethnicity or gender, and roughly half of all cases arise in families with no history of the condition.

The types of NF include neurofibromatosis type 1 (NF1), and all types of schwannomatosis (SWN), including NF2-related schwannomatosis (NF2).

Awareness of NF, along with a lack of understanding of the signs and symptoms, even amongst healthcare professionals, is far too common and has the potential to be life-threatening.

Delays in diagnosis mean that critical health checks and monitoring of new or existing tumours is not happening or not happening regularly enough. This can have a significant long-term impact on a person’s health and wellbeing.

We are Australia's only community-based organisation for neurofibromatosis support, advocacy and research.

Our vision is a life without limitations for everyone living with NF in Australia.


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Why your support is so important

Unpredictable and progressive, NF is felt throughout a lifetime and by the whole family. Please watch this video to learn more about the impact that NF can have.

Video: Meet Emme, the girl with a million dreams