Support

First established in 1991 by Professor Kathryn North, the pre-eminent Australian name in NF care and research, this multi-disciplinary paediatric clinic runs every Wednesday afternoon, seeing over 300 children each year. This clinic supports local services (GP's, paediatricians and geneticists) in the care of children with NF, and reviews children with complex NF.

The CTF assists the clinic by providing funds to employ a Clinical Nurse Specialist who helps families navigate the NF journey and services within the hospital setting.

To access the clinic, you must have a valid referral from your local paediatrician or from the genetics department at your local hospital.  

Please address these referrals to the clinic director Dr Manoj Menezes.

NF Learning Disorders Clinic:

A multi-disciplinary NF clinic run through the Department of Clinical Genetics, it serves as a hub for care of complex NF patients, thanks to funding from the CTF. In addition to running an adult skin clinic that services NF patients from any location in NSW, they also support more complex paediatric patients from within their local area. The clinic also serves as a training ground for geneticists, dermatologists and other medical and nursing staff.

Skin Clinic:

The NF Skin Clinic was established in response to evidence that the cosmetic impacts of NF are of high importance among affected adults. This procedure clinic works to improve the cosmetic management of NF and sits alongside the general management clinic. It provides world-leading treatment for NF skin issues with the use of laser therapy and topical treatments to reduce tumours, itch and other common skin symptoms that affect general wellbeing. The clinic’s collaboration with the Burns Unit allows for improved facilities and the ability to treat more complex lesions. The clinic also continues to look for improved treatments options and runs both clinical and laboratory research into topical therapies for cutaneous skin lesions.

The CTF contributes significant funding to help reduce waiting times and increase capacity. The CTF has also assisted with funding additional laser equipment, which has proved to be beneficial in the treatment of cutaneous neurofibromas.  

The video below shows the ease and effectiveness with which this treatment can be delivered by the team.

To access the clinic you must have a valid referral from your GP. Please ensure all referrals are addressed and sent to: Assoc. Prof. Yemima Berman (Department of Clinical Genetics, Royal North Shore Hospital).

NF Centre for Translational Research:  

With the generosity of John Hughes (Life Patron) and the Listorti Family, the CTF has funded this centre that aims to support and provide services for the early adoption of new therapies and screening options for people with all types of NF. Recently, one of their studies resulted in women with NF being able to access free Breast Screening from age 30 years rather than the standard 50 years.

Learn more about this study here.

This paediatric multi-disciplinary clinic runs every second Wednesday and allows for same-day appointments for regional and vulnerable families. The CTF funds a Clinic Support Coordinator to ensure families have a more streamlined hospital experience, and they also provide support, information and connections to community services. 

The clinic is also involved in research and the CTF has funded Clinical and Research Fellows and administration, along with providing additional sessions from a Developmental Paediatrician.

NF Learning Clinic:

This is a part of the wider multi-disciplinary team who see children for cognitive and learning assessments. The clinic receives funding from the CTF to employ a Barney Research Fellow and provides intervention strategies to support learning, education and behaviour.

To access this clinic you will need a valid referral from your local GP or paediatrician. Please note your local GP can write indefinite referrals. These will be valid for only one specialist within the clinic.

Please address these referrals to Dr. Gabriel Dabscheck  and Fax to: 03 9345 5034