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. You can find their contact information and some details about eligibility to access the clinics here:
To access any of these clinics you must have a valid referral from your GP or local paediatrician.
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
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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
Referral:
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
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Appointments:
Phone: (03) 9345 5571 / 0448 054 604
Email: kylie.clark@rch.org.au
Referral:
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
Appointments:
Neurosurgery Office
Phone: (03) 9342 8959
Email: nsurgclerk@mh.org.au
Referral:
Prof Kate Drummond
Fax: (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.