Dialog Box

Children's Tumour Foundation of Australia

Navigating Care

helping families navigate a complex condition and health system

Neurofibromatosis (NF) in all its forms is complex, unpredictable and progressive. NF can have a significant impact on a person's physical, cognitive, behavioural and emotional wellbeing. Having the right supports in place to assist on your NF journey is critical. 

It is also a lifelong condition, so it is important that you have a team of healthcare professionals with knowledge and experience of the condition (where possible). But if you have concerns, our support team are here to help you navigate these challenges.

NF CLinics

There are currently four clinics in Australia specialising in the care of people with NF. At present, the Children's Tumour Foundation funds two paediatric specialist roles at the Children's Hospital Westmead and the Royal Children's Hospital Melbourne.

To access any of these clinics you must have a valid referral from your GP or local paediatrician. You can find their contact information and some details about eligibility to access the clinics here:

Children's Hospital at Westmead

Age Range: 0-18 years

Accepts referrals from: Paediatrician and Specialists (not GP)

Conditions seen: NF1, NF2 and SWN (will not see if undiagnosed)

Referrals: Complex only 

Funded by the Children's Tumour Foundation

visit website 

NF Clinic Appointment Contacts:

Daralyn Hodgson
Manager Neurogenetics Clinical Services
Email: SCHN-CHW-Neurogenetics@health.nsw.gov.au
Phone: (02) 9845 1325
Referral: Dr Manoj Menezes

Sally Maspero
CNS Neurogenetics/Neurofibromatosis (Tuesday, Wednesday & Thursday)
Email: sally.maspero@health.nsw.gov.au
Phone: (02) 9845 1325

NF1 Learning Disorders Clinic: 

Phone: (02) 9845 3057
Referral: Dr Natalie Pride

Royal North Shore Hospital

Age Range: 0+ years

Accepts referrals from: GP, Paediatrician and Specialists

Conditions seen: NF1, NF2-related SWN and SWN (including undiagnosed)

Referrals: Must be within area

NF Clinic Appointment Contact:

Martin Good
Department of Clinical Genetics, Royal North Shore Hospital
Phone: (02) 9463 1727
Email: NSLHD-clinicalgenetics@health.nsw.gov.au

NF Clinic Flyer and NF Skin Clinic Flyer


Assoc. Prof Yemima Berman
Fax: (02) 9463 1057

The Royal Children's Hospital Melbourne

Age Range: 0-18 years

Accepts referrals from: GP, Paediatrician and Specialists 

Conditions seen: NF1 and NF2-related SWN only

Referrals:  Will accept patients from out of the area / must fax

Funded by the Children's Tumour Foundation

visit website 


Phone: (03) 9345 5571 / 0448 054 604
Email: kylie.clark@rch.org.au 


Dr Gabriel Dabscheck
Fax: (03) 9345 5034

The Royal Melbourne Hospital

Age Range:  18+ years

Accepts referrals from: GP, Paediatrician and Specialists 

Conditions seen: NF1 only

Referrals:  Will accept patients from out of the area / must fax


Neurosurgery Office
Phone: (03) 9342 8959
Email: nsurgclerk@mh.org.au


Prof Kate Drummond
(03) 9342 4234

Health professionals database

With a national database of healthcare professionals, we can guide individuals and families to locate the services they are looking for.

If you would like more information or help finding a specialist, please get in touch on 02 9713 6111.

Assistance with NDIS

Our Support Coordinators can also help with navigating the NDIS. We understand it can be a complex process and have some NF specific information to help guide you and health professionals who might be supporting you. So please get in contact whether you are starting the process or even if you have applied and been rejected.  

Assistance with advising educators 

The CTF can represent individuals and speak directly with day-care centres, schools, universities or employers. See our school resources here

Assistance transitioning from paediatric to adult care

The Support Services team can assist with the transition from paediatric to adult health systems and has a specialised toolkit to guide young people as they develop their skills with independent illness self-management.