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Our Purpose
Neurofibromatosis is a hard word to say, but its even harder to live with. We are the only dedicated neurofibromatosis patient advocacy and support service in Australia for children, adults and their families.
Our vision
A life without limitations for everyone living with Neurofibromatosis.
We believe
that tumours should never be a child’s normal.
We exist
to provide hope for everyone impacted by Neurofibromatosis.
We work
to advance research, advocate for change and provide support and connection.
The impacts of NF
The condition can often impact a person physically, mentally, academically, financially and socially.
wait over 4 years for a diagnosis
report an impact on their mental health
experience regular pain
have been social isolated
have experienced bullying
forgo care or treatment due to cost
Our programs aim to
Invest in research that will increase treatment options, and the search for a cure.
Care for families, educate them on the condition and help them access supports.
Bring kids and their families together via virtual meetups and camps across Australia.
Make NF a national priority and life more equitable for everyone living with NF.
Our impact last financial year
1000+
patient appointments at the pediatric NF clinics
9500+
support interactions and close to 100 health kits shared
800+
attendees at camps, event and virtual peer support sessions