For Patients

The following information sheets have been sourced from organisations and websites we have affiliations with and agreement from to share their material. Our Support Coordinators are working hard to create Australian specific information sheets, but in the meantime please see the details under each link for Australian specific updates. See our Recently Diagnosed page for a list of ways you can also get involved.

  • (NF) - Neurofibromatosis

  • Neurofibromatosis Type 1

  • Optic Pathway Gilomas (OPG) in NF1

  • Neurofibromatosis Type 1 - Arabic

  • Neurofibromatosis Type 1 - Chinese

  • Neurofibromatosis Type 1 - Vietnamese

  • Neurofibromatosis Type 1: A Guide for Adults and Families

  • Learning and Cognitive Difficulties in Neurofibromatosis Type 1: Explanations and Practical Strategies

  • My Child has neurofibromatosis Type 1, What Should I Tell The Teacher?

  • NF Buddies: A Child’s Perspective of NF

  • Developmental Co-ordination Disorder – Dyspraxia

  • Neurofibromatosis Type 1 and Employment: Information for Employers

  • NF2 Patient Factsheet about Radiosurgery and other Radiation Treatments

  • Neurofibromatosis Type 2 and Employment: Information for Employers

  • About Schwannomatosis

In Australia there are three centres for NF1: The Royal Children’s Hospital, Melbourne; The Children’s Hospital at Westmead, Sydney; Royal North Shore Hospital, Sydney (adults and children).

The pain management factsheet will also be relevant to those with NF2 and Schwannomatosis. Visit Chronic Pain Australia (link to: or the Australian Pain Management Association (Link to: for information relevant to Australian residents.

The Job Access (Link to: website provides information and guidance in regards to the Employment Assistance Fund for support and equipment aids in the workplace.

DISCLAIMER: While reasonable care has been taken by the Children’s Tumour Foundation of Australia to ensure the information provided on these pages has been sourced from reputable sources and where medical information is concerned from organisations for which there is a medical advisory board to ensure the information we provide to you is as accurate and up-to-date as possible, we cannot accept liability for errors, omissions or information becoming out-of-date. The information on this site is provided solely for information purposes. It is not to be used as advice nor as a substitute for proper medical care. Please consult a qualified healthcare professional who understands your particular history for individual concerns.

*We would like to acknowledge and thank The Neuro Foundation and The Children’s Tumor Foundation for their willingness to share their resources with you on our site. We have express permission from The Neuro Foundation to include these factsheets on our website and we would like to thank them and their authors and contributors for allowing us to share their information.