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EVERY VOICE COUNTS.

The Children’s Tumour Foundation is proud to be working towards delivering a Neurofibromatosis Health and Social Impact Assessment – the first of its kind in Australia. Help ensure your voice and NF experience is heard and accounted for in future advocacy and policy. Complete the survey before April 19.

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Steps Towards a Cure

Walk or Run 150km this May for the 150 kids born each year with NF in Australia. Today there is no cure for NF tumours, but tomorrow is another story.

Purchase your own Pebbles, the Penguin

Pebbles, the Penguin has been lovingly created in partnership with Kidstuff, who understand, as we do, how important it is that every child and adult living with NF not journey alone. Order yours today.

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EVERY 3 DAYS A CHILD IS BORN WITH NF IN AUSTRALIA

Neurofibromatosis (NF) refers to a group of genetic conditions that cause tumours to form on nerves throughout the body, including the brain and spine. There is no cure and treatment options are limited.

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ATTEND A FREE NF CAMP

You can now register for the 2024 WA Camp. More locations and dates to be announced soon.

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Connect with a support coordinator

We understand the NF journey and can support families throughout their diagnosis, treatment and beyond.

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I'd like to Learn about neurofibromatosis

Learn about the genetic condition that affects 1 in every 2,000 Australians

Learn the facts

I'd like to connect with the ctf

Discover who we are, what we do and how we can assist you on your journey.

we can help

I'm a healthcare professional

Get to know NF, the diagnostic criteria and signs and symptoms to assist your NF patients.

I'd like to know how to get involved

There are many ways to make a difference and your support can help change lives.

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The Children’s Tumour Foundation is a patient advocacy and support service for everyone impacted by NF.

Neurofibromatosis (NF) refers to a group of rare and complex genetic conditions that cause tumours to form on nerves throughout the body.

NF can lead to a range of significant health issues such as deafness, blindness, physical differences, bone abnormalities, learning difficulties, itch, chronic pain and even cancer.

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a child is born with NF in Australia

of cases have no family history of the condition

people are living with NF in Australia

Moving towards a future free from tumours

Those living with NF face significant health issues, struggle to find the right diagnosis, get access to the right treatments, and sometimes face discrimination, stigma or even exclusion.

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

Support

Addressing immediate needs

Beyond the need to treat the physical symptoms of NF, we create opportunities to learn and to come together in safe and supportive spaces.

Advocacy

Leading change for a better tomorrow

NF is progressive, painful and unpredictable. Our goal is to make life more equitable for those living with this complex genetic condition.

Research

Giving hope for a future free from tumours

We are one of Australia’s leading charitable contributors to NF research with millions of dollars invested into key projects through on-going advocacy efforts and direct funding.

nINE-YEAR OLD sOL STRUGGLES WITH LEARNING CHALLENGES

Nine-year-old Sol is kind, funny, loves reading, playing with lego and illustrating. He is also a twin, though despite their many similarities, there is one key difference. He has Neurofibromatosis Type 1 and his brother, Leo, doesn’t.

Sol relies on many allied health professionals to address a wide range of issues, from learning difficulties, speech impairments to low muscle tone and fatigue. He will likely need this support for the rest of his life.

Read Sol's story

Ten-YEAR OLD tOM navigatES school and emergency surgeries

Tom Smith is a resilient 10-year-old boy. His journey with NF began at just six months old when his family noticed one of his pupils was larger than the other. After a long journey, he was finally diagnosed at age two.

Tom has endured a lot in his 10 years including two emergency surgeries to relieve extreme pain caused by a rare tumour impacting his facial bones and jaw. This tumour has caused facial differences that Tom is learning to accept with the help of a psychologist.

Read Tom's story