Diagnostic criteria
Review the most up-to-date diagnostic criteria for all forms of NF, including neurofibromatosis type 1 (NF1) and all types of schwannomatosis (SWN), including NF2-related schwannomatosis (NF2), formerly known as neurofibromatosis type 2.
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 two paediatric clinics.
NF Clinical Symposium
The event brings together health professionals and researchers to network and discuss the latest in medical management, treatment and research into neurofibromatosis in Australia and around the globe.
Medical Review Checklist for NF1
View our checklist for Children and Adults with Neurofibromatosis Type 1.
Comprehensive Health Assessment Program
This booklet is for GP's to use as health assessments for adults who live with an intellectual disability. Page 26 includes a syndrome list that includes neurofibromatosis.
NF1 learning module for GP's and Paediatrician's
Explore Neurofibromatosis Type 1 (NF1) and the GP and Paediatrician's role in the complex diagnosis and management journey of patients and their caregivers.
In this RACGP CPD Approved and ACCRM CPD Accredited activity produced by CPD provider Lateral Connections, join the experts in an immersive online program and earn 2 hours of CPD (including 1 hour of reviewing performance).
The learning objectives:
- Discuss the pathophysiology, burden, and impact of NF1 in children
- Identify the symptoms associated with NF1 throughout childhood
- Apply the diagnostic criteria of NF1
- Discuss management strategies related to NF1 symptomatology.
Referrals to the CTF
The Children’s Tumour Foundation supports every child, adult and carer/parent impacted by NF. We provide a range of services, such as camps, helping families access NDIS, providing information resources and healthkits, and we also run a national helpline. Please direct any NF patients to us in case they may benefit from a program.
Key findings from the 2025 NF Clinical Symposium
Please find below summaries of key presentations from the 2025 NF Clinical Symposium, designed for Health Care Professionals
Sleep Problems and Circadian Rhythm Disruption in Children with Neurofibromatosis Type 1: Evidence from Actigraphy and Nocturnal Melatonin' given by Dr Natalie Pride
'Supporting Auditory Processing Difficulties in Children with NF1 Using an Assistive Listening Device' given by Dr Hayley Darke
'Modelling the neurodevelopmental phenotype of NF1 using patient-derived stem cells' given by Dr Kiymet Bozaoglu
‘NFSURE Study: Supporting Reproductive Choices and Decision-making for Adults with Neurofibromatosis’ given by Dr Brooke Gardiner
Research links
Breast Cancer Screening for Women with Neurofibromatosis Type 1
Department of Clinical Genetics
NSW Government
NF1 Neurofibromatosis-associated tumours of childhood in the molecular era
Nagabushan, Medicus, 2021
How To Treat – Neurofibromatosis Type 1 2019
Higgins et al., ausdoc.com.au, 2018
NF1 Genetic testing
NSW Government/EviQ, 2020
Facts for people and families with Neurofibromatosis Type 1
NSW Government/EviQ, 2020
Neurofibromatosis Type 1 Best Practice Guidelines
Evans, BMJ Best Practice, 2020
Care of Adults with Neurofibromatosis Type 1: A Clinical Practice Resource of the American College of Medical Genetics and Genomics
Stewart et al., AMCG Practice Guidelines, 2018
Health Supervision for Children with Neurofibromatosis Type 1
Miller et al., American Academy of Pediatrics, 2019
Neurofibromatosis Type 1 - Risk Management
EviQ, 2019
Get in Touch
Our support team has a wealth of knowledge and can help answer most questions about NF. Please get in touch on 02 9713 6111 or at info@ctf.org.au for more information.
