Dialog Box

Children's Tumour Foundation of Australia

Want to know more

Want to know more

Seeking more iNFormation?

If you’ve found yourself here on the Children’s Tumour Foundation website, there’s a high chance you’ve just met someone living with neurofibromatosis (new-ro-fibro-ma-tosis), or NF for short. 

The information card that you have been given is a way for you to find out more about the impacts of NF.

Below you'll find some facts to help you understand this incredibly diverse condition that is most often diagnosed in early childhood, but is a lifelong genetic condition.

Janu lives with hundreds of visible neurofibromas on the surface of her skin and is often questioned about them by complete strangers. She is also an NF Ambassador for the Children's Tumour Foundation and uses her lived experience of NF to educate the broader community and empower others to speak out.

Fast NF Facts

NF is rare, but common! In Australia more than 13,000 Australians have been diagnosed with the condition. In fact, it is one of Australia's most prevalent neurological genetic disorders.

NF does not discriminate, it can affect anyone regardless of ethnicity, gender or family history. 

While it is a challenging health diagnosis, people with NF do live full lives, conquering NF in their own way. They are students, parents, valued employees and active members of the community.

NF is something that you are born with. It causes tumours to grow anywhere in the body where nerve endings are found. This means that NF-related tumours can grow deep inside the body, develop on the skins surface, or both and at any time.

It is not an infectious diseasebut the result of a mutation or deletion of the NF gene.

50 per cent of cases are spontaneous, meaning there is no family history of the condition. The other half of cases are passed down from a parent to a child, but there is no way to predict how mild or severe each case will be.

No two cases of NF are the same. Hearing loss is common amongst those living with NF2, and 20 per cent of children with NF1 will develop tumours behind the eyes that can cause blindness if not monitored and treated. However, this is a condition that affects the nervous system, so tumours have the potential to form anywhere and can cause physical differences, scoliosis, learning difficulties, chronic pain and cancer.

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

Neurofibromatosis Type 1 (NF1) NF2-related schwannomatosis (NF2) Schwannomatosis 

Researchers are working hard to better understand why behavioural issues are also common in people diagnosed with NF, and why in a small percentage of cases usually benign tumours can become cancerous, and most concerningly, life threatening.

Six year old Danika has neurofibromatosis type 1 (NF1).

She showed signs of NF at just five weeks after coffee-colour spots (called cafe-au-lait spots) started to appear on her body - a tell tale sign of NF1.

Unfortunately, she also started to complain of headaches when she was two, which was caused by a 5cm tumour in her cerebellum. She had two brain surgeries within two months.

Whilst some tumours are visible, many are not, and in 10 per cent of cases they can become cancerous. 

Danika was soon after diagnosed with a rare stage 3 brain cancer. Fortunately, she was able to access a life-saving drug trial which has stabilised her tumour. This photo tells the story of that joy.

There is no cure for NF and treatments options are limited. 

Our role at the Children's Tumour Foundation:

We raise awareness.
We fund research.
We support families.

You can join us by supporting our work with a once off or regular donation. If this is not possible for you, we encourage you to share what you have learned about NF today with someone else and ask them to do the same.

We sincerely thank you for your interest and time today. Together we can Conquer NF.

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If you would like to learn more about NF please click here.

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