A single gene change can cause a lifetime of tumours
Neurofibromatosis is a hard word to say, but its even harder to live with.
From the time a family first learns that their child has NF, they take their first step on a heart-wrenching journey—one where the outcome will always be uncertain.
Though the severity of the condition ranges from person to person, it is understood that as many as 1 in 5 children will develop a brain tumour, women between 30-50years with NF1 are at a five-fold greater risk for breast cancer than the general population and up to 10% of plexiform neurofibromas (tumours) will become cancerous*
We are the only dedicated neurofibromatosis patient advocacy and support service in Australia for children, adults and their families.
We are there for every parent who has felt their world narrow with the news of a diagnosis. For the sibling who has watched their brother or sister live in pain or miss out on normal childhood experiences. For the adult who is considering a family of their own. For every family that pushes through their darkest moments with extraordinary strength.