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.

Read more

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

DONATE NOW OTHER WAYS TO SUPPORT

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

Blog

Advocacy remains a strategic priority for the Children’s Tumour Foundation (CTF) and here are a few recent updates on progress being made.

Blog

March 8 is International Women's Day, with an important theme aiming to improve fairness for all.

Blog

Neurofibromatosis (NF) is a complicated condition, so it makes sense that it requires a complicated solution…or does it? When it comes to NF, collaboration over complication is needed.

Blog

February 28 marks Rare Diseases Day, a time to raise awareness and instigate change for all people living with a rare condition.

Donate