Funding for the NF Centre for Translational Research at Royal North Shore Hospital

Media Release / 15 Dec 2017

On Friday 15 December, the NSW Minister for Health and Medical Research, Brad Hazzard, announced the establishment of a new multi disciplinary NF Clinic at RNSH.

This clinic will specialise in the treatment of complex medical problems related to Neurofibromatosis (NF) and serve as a hub for NSW Health to advance patient care.

NF is a genetic condition that can cause tumours to grow on nerves anywhere in the body and affects around 1 in 2,500 people. Whilst it is one of the most common rare diseases it is relatively unknown, including in the medical community, and hence many cases are either misdiagnosed or go undiagnosed, hence leading to improper care. Every case of NF is different, there are very few treatments and no cure.

This Centre will assist in ensuring better diagnosis and care for NF sufferers across NSW hence it is a critically important initiative

Some 50% of NF cases are inherited whilst 50% are spontaneous and can lead to blindness, deafness, bone abnormalities, cancer, disfigurement, learning difficulties, chronic pain, disabilities and death. Children can suffer bullying because they’re different and many adults become reclusive.

Derrick Hubble, CEO of The Children's Tumour Foundation praised the support of the Hughes and Listorti families who have made a commitment of $50,000 each for 3 years - a total of $300,000 - to establish and develop the clinic on behalf of the Children's Tumour Foundation of Australia (ctf.org.au).

CTF is the only organization in Australia focused on NF and provides support through specialist clinics in Sydney, Melbourne and soon to be Brisbane along with Support Coordinators and clinical nurses. In addition it organises family camps, support groups, information seminars and Australian NF Symposiums for doctors.

John Hughes is the Chairman of CTF and is strongly supported by his wife Robyn. John's mother suffered NF which eventually led to her death. Melanie and Eddie Listorti are significant benefactors to CTF on behalf of their 10 year old daughter Anna who has complex issues associated with her NF.