It is pronounced neuro-fibro-ma-to-sis. It is a really long and complicated word to say, so we refer to it as NF.
Neurofibromatosis (NF) refers to a group of complex genetic conditions that cause tumours to form on nerves. NF includes neurofibromatosis type 1 (NF1) and all types of schwannomatosis (SWN), including NF2-related schwannomatosis (NF2), formerly known as neurofibromatosis type 2.
NF1 was named after Friedrich von Recklinghausen, a German pathologist, who first described neurofibromas in 1882. NF1 has until recently been referred to as von Recklinghausen’s disease. It has also been referred to as Peripheral NF.
NF2-SWN has also previously been referred to as bilateral acoustic neurofibromatosis or central neurofibromatosis, and was more recently referred to as Neurofibromatosis type 2.
Schwannomatosis has only recently been separated as its own condition, and is also an umbrella term for for several more rare types of NF.
All types of NF collectively occur in 1 in 2,000 births.
NF1 is the most common type of NF and occurs in every 2,500 children born.
All types of schwannomatosis are much rarer, affecting 1 in every 20,000 births.
NF2-SWN affects 1 in every 25,000 births.
No. You cannot catch NF from someone else. NF is something you are born with.
Currently, there is no cure for any of the forms of NF, and limited treatment options are available. Those that are available are specific to individual or groups of symptoms.
No. A diagnosis of NF is not considered a disability or illness. Many people with this condition live healthy, long and fulfilling lives. However, some people do experience complications associated with NF which may cause disability.
Yes – for some people. Access to financial support through Centrelink and access to the National Disability Insurance Scheme (NDIS) and other community organisations will depend on your individual circumstances. These organisations adhere to strict eligibility guidelines that not everyone affected by NF will meet.
For a personalised discussion about applying for supports and services contact our Support Team.
No. Excellent medical care and services are provided in Australia through the Medicare system at no cost to citizens and residents.
NF is caused by a change in your genes. These are the instructions that make all the ingredients that make you who you are. We all have two copies of every gene, one from mum and one from dad. To have NF we only need one changed or faulty copy of the NF gene.
Head to What causes NF? or our resources section for more information.
No – NF is just as often a spontaneous change as it is inherited from a parent. Schwannomatosis is in fact more often spontaneous than inherited (85%).
Regardless of whether you are the first in your family to have NF or it has been around for a generation or two, each time you conceive there is a 50% chance that your potential child will have NF. That is because you pass on only one of your two copies of the NF gene and only one of them has the fault or change that causes NF.
No. Each form of NF is its own distinct condition. Once a gene change has occurred each time it is passed on it will be the same change and the same condition though symptoms will vary.
Gene editing or gene therapy is the replacement or insertion of a gene in the cells of a person. In principle gene editing has a lot of potential, but there’s still a long way to go before it can be considered for use to treat or even cure NF and other medical conditions. This is because along with needing to iron out some of the scientific challenges like what vector to use and how exactly the therapy would be delivered there are ethical, political as well as scientific or medical issues that have not yet been addressed.
For more detail read the Centre for Genetics Education FACTSHEET 23: GENE THERAPY
There are lots of ways you can get involved! From hitting the Donate button to organising your very own community fundraiser, or even writing to your local Member of Parliament, you’ll find lots of ways to get involved.
Please read through the other sections on this website (especially Living with NF). The CTF Support Team is available to talk you through any of the information on this website and help with other questions you might have. They can also provide you with additional resources or assist you with finding relevant specialists in your area. Please contact them on 02 9713 6111 or email support@ctf.org.au.
CTF stands for the Children's Tumour Foundation of Australia (CTF). You can find out more about the CTF under About Us.
Yes, the Children's Tumour Foundation of Australia is registered with the Australian Charities and Not-for-profits Commission (ACNC).
The Children's Tumour Foundation of Australia is also endorsed as a Deductible Gift Recipient (DGR).
If you require any further information, please contact us at info@ctf.org.au or 02 9713 6111.
The Children's Tumour Foundation (CTF) offers a highly knowledgeable support team, who are often the only option for families to turn to throughout their diagnosis, treatment and beyond. We provide a free national helpline, fund clinical nurse specialists roles in two major children’s hospitals, fully subsidised NF family camps and community days and peer support initiatives, like NF Connect, and a monthly virtual meetup. It is because of your donation that ALL of our services remain free of charge for the families that require our support.
Additional funding from your generous financial contributions are also invested into Australian based research projects (currently totalling more than $1.3 million invested by the CTF), and important advocacy that has recently allowed for a further $4.6 million commitment to research by the Medical Research Future Fund (MRFF).