NEW SOUTH WALES NF HEALTH PROFESSIONAL DIRECTORY This list of clinics, support services and specialists has been developed based upon the recommendations of families and individuals within the NSW community. This is not intended to be a complete list. As CTF does not have direct knowledge of many of the specialists listed within this document they cannot be considered to be endorsed by us. It is important for everyone impacted by NF to have a good General Practitioner (GP)/family doctor who can make note of any changes over time and can assist with specialist referrals when required. Most importantly you should have a good relationship with your GP, and they should be either willing to go away and do their own learning about NF or be guided by you and your individual needs. It is recommended that children see a paediatrician and ophthalmologist at least once every 12 months for ongoing monitoring and management along with any other specialists your medical practitioner deems appropriate. Many adults with uncomplicated NF may best be served by regular visits to their GP alone for at least annual blood pressure checks and monitoring of any new features of the condition with referral to specialists as required. For those impacted by NF2, Schwannomatosis or complicated NF1 it may be that you/your child is more closely monitored by either a neurologist, neurosurgeon with input from other specialists as needed. You may also like to see a Genetic Counsellor. You can find clinic details here: https://www.genetics.edu.au/genetic-services/general-genetics-clinics#nsw-regionalcentres and related information https://www.genetics.edu.au/individuals-and-families/genetic-conditions The below list is a good place to start as these are specialists who have an interest or knowledge of these conditions. This list is by no means exhaustive and is current as of November 2019, but you can contact us for updates as required. Many people with uncomplicated NF can be managed by their GP.
Children’s Tumour Foundation of Australia Suite 2, 451 Lyons Road West Five Dock NSW 2046 | PO Box 454 Five Dock NSW 2046 P 02 9713 6111 | F 02 9712 8524 | E info@ctf.org.au | W www.ctf.org.au ABN 26 148 815 534