Dialog Box

Children's Tumour Foundation of Australia

HELPING ANYONE IMPACTED NAVIGATE THE NF JOURNEY

about us

Discover who we are, what we do and how your support can help change lives.

WHAT WE DO

NEUROFIBROMATOSIS   

Learn about the genetic condition that affects 1 in every 2,500 Australians  

LEARN THE FACTS

LIVING WITH NF

NF is a lifelong medical condition, but the impact of NF changes with each stage of life.

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ON THE JOURNEY

Are you thinking it might be Neurofibromatosis, but yet to receive a diagnosis?

WE CAN HELP

TOGETHER WE CAN #CONQUERNF

“Parenting a child with a genetic condition can be a stressful and painful journey. Maintaining hope for a better future for the child you love is critical, and at the centre of that hope is research. Knowing that research is ongoing to better understand and treat NF keeps the hope alive for so many of our families."

 NF Hero Mum

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Jack was born with a bowed leg, which was initially thought to have been caused by his breached position in utero.

At 7 months of age, following a trip to the GP and a subsequent referral to an Orthopaedic Surgeon, Jack was diagnosed with Tibial Dysplasia - a rare symptom of NF1 occurring in around 1 in 150,000 births.

The initial diagnosis was a shock as there is no family history of NF1.

By the time Jack was four years old, he had already undergone three surgeries on his leg to correct bone bowing, which had reached 85-degrees at the time of his first major surgery.

Now five, Jack has had more MRIs, needles and specialist appointments than any person should have in their lifetime.

Parents, Mel and Lee, had never heard of neurofibromatosis before Jack’s diagnosis and were shocked to learn that 1 in 2,500 births are affected by the condition.

They’ve shared their story because they believe that awareness and vital funds can lead to better treatments and ultimately a cure for Neurofibromatosis.

 READ JACK'S STORY HERE

Latest News View all news

News

The secret of change is to focus all of your energy not on fighting the old, but on building the new.

News

The monkeypox outbreak has garnered widespread media attention around the world. Alarmingly there have been recent reports from people who live with the lifelong condition neurofibromatosis (NF), facing adverse reactions, harassment and confusion.

News

The PBAC is interested in hearing from people and families with NF1 and inoperable plexiforms to better understand the impact of the condition and the challenges patients and families face.

News

TiNT is recruiting at twelve centres across Australia and New Zealand with the final site to open in the coming months. Here is an update on the progress being made to date.

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