Why take part
Your support is what's needed to change lives.
Neurofibromatosis is hard to say. And harder to live with.
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.
The condition impacts every part of a persons quality of life, including a person’s physical health, mental health, social relationships, work and education.
Here to support and speak out
The Children’s Tumour Foundation (CTF) is the only patient advocacy and support service for kids, adults and families impacted by all types of neurofibromatosis, or NF, including NF1, NF2-related schwannomatosis (NF2-SWN) and schwannomatosis (SWN).
We exist to provide free, specialised support, connection programs, guidance navigating healthcare, advocacy and research.
Recent achievements
Support services grew 77% last year as more families reached out.
1 tumour-shrinking drug was added to the PBS allowing thousands to access treatments.
The first NF Health and Social Impact Assessment in Australia was completed.
More than 90 new patients were seen at an NF Clinic, for coordinated care.
More strides
As exciting as these milestones are, there is more work to do.
Expert knowledge and specialised care are limited, making management of the condition difficult. Many struggle to reach a diagnosis, get access to the right treatments, and sometimes face discrimination, stigma or even exclusion. NF is highly variable, unpredictable and progressive, and those living with it will need a lifetime of support.
We're stepping up to the challenge, to provide and promote the best possible care for NF. And we're asking you to do the same.
For our NF heroes
13,000 Australians live with NF. Half of all cases arise in families with no family history.
Archie
Archie was diagnosed with a kidney condition when he was three months old. Two years later when his speech was falling behind, his parents took him for further medical assessments. Within an hour and a half, neurofibromatosis type 1 was on the list for investigation.
Charlotte
As a baby, Charlotte was failing to thrive and wasn’t meeting her milestones. She was diagnosed with NF1 and eosinophilic esophagitis, a chronic immune system disease. At four-years-old an MRI revealed that Charlotte has an optic pathway glioma, a brain tumour, that can cause blindness.
Thomas
Thomas was clinically diagnosed with Neurofibromatosis Type 1 at 15 months old, after an unsettling infancy. Since then, Thomas' life has been far from ordinary – enduring unexpected symptoms, multiple surgeries, countless doctor's visits, and long-distance travel for appointments.
Your impact
By taking part as a fundraiser, or making a donation to a friend or family member Stepping Up for NF, you'll help support a family struggling with a complex condition today and create better health outcomes for tomorrow.
Care
Assist newly diagnosed families via a national helpline and NF Clinics.
Connect
Bring kids and their families together at camps and virtual peer support groups.
Empower
Provide information to improve health literacy and health management.
Advocate
Improve access to quality healthcare, supports and more treatments.
Let's step up for NF, together.
Step up for the 150 children born with NF each year in Australia.
Step up for the 1 in 5 children with NF facing brain tumours.
Step up for those losing their hearing or sight this year.
Step up for kids unable to run, walk, or play like others.
Step up for those who've lost loved ones to NF.
Step up for your loved ones – with your team.
Step up to rewrite the story of NF.