Our Purpose

Conquering NF

Thousands of kids and adults live with a genetic condition that causes tumours to form throughout their body, which can cause significant health issues, is hard to diagnose, has limited treatments, and no cure.

Despite being one of the most common genetic conditions and in half of all cases there being no family history, awareness and funding for NF remains low.

The Children's Tumour Foundation is the only support service in Australia for those with NF and provides free services while advocating for change and investing in research.

We believe that tumours should never be a child's normal.

VISION

A life without limitations for everyone living with Neurofibromatosis.

MISSION

To provide hope for everyone impacted by Neurofibromatosis in Australia by advocating for change, advancing research and empowering this community with the knowledge, connections and support needed at every stage of their journey. 

our community

Our community includes everyone living with Neurofibromatosis (NF) in Australia (diagnosed and/or diagnosed), including children and adults, along with their family, carers and friends. It also includes healthcare professionals, employers and educators.

NF can affect anyone regardless of age, ethnicity, gender or family history.

why we exist

Our core priorities for the NF Community are:

Greater awareness

A condition that can cause blindness, deafness, physical differences, tumours and cancer in both children and adults should be a national priority. Sadly it isn’t, yet.

Though some types of NF appear as frequently as 1 in every 2,000 births, awareness and funding for NF remains low.

This obscurity makes many adults and children feel invisible, under recognised and under supported.

Early diagnosis

Awareness of NF, along with a lack of understanding of the signs and symptoms amongst healthcare professionals is far too common and has the potential to be life-threatening.

Delays in diagnosis mean that critical health checks and monitoring of new or existing tumours is not happening or not happening regularly enough. This can have a significant long-term impact on a person’s health and well-being.

With 1 in 5 children with NF developing a brain tumour, without careful monitoring, these children could become vision impaired, blind or something far worse.

Access to supports 

Up to 80% of children with NF will experience learning or behavioural difficulties.

Without early intervention, it becomes increasingly difficult for these children to fully participate in school or play; creating a lifelong ripple effect.

Managing this complex condition requires multi-disciplinary care, with some families seeing up to a dozen specialists.

Those living with NF also face isolation, bullying, high healthcare costs and challenges studying and accessing employment.

Treatments and a cure 

Beyond the initial shock and grief of a diagnosis comes the realisation that NF is a progressive condition, with few treatments and no known cure.

There is no way to predict when, where or how severely a tumour will impact function and so families live in constant fear of the unknown.

Many tumours are inoperable, others have no treatment plan other than to “watch and wait” and individuals who do trial new drugs, often face challenging side effects.

Countless kids and adults are waiting on treatments that don't yet exist.