Individuals & Families

Neurofibromatosis Information Seminar 2018

Videos and Transcripts
 

CTF Webinars

NF1 - Plastic Surgeon's Toolkit

Laser and other treatments for NF1 skin related symptoms - Mr Mark Baldwin

NF2 and Shwannomatosis

The Latest treatment options for acoustic neuroma and other complications - Associate Professor Nigel Biggs

The Transition Process

Transitioning from teenagers to adults - Dr. Jane Ho and Fabienne Edema-Hildebrand 

CTF Australia Publications

CTF Australia Brochure

New NF1 Brochure

NF1 Brochure (translations below)

- Arabic

- Chinese

- Vietnamese

NF1 and Optic Glioma Brochure

NF2 Brochure

NF Hero Children's Book 

NF1 Learning Toolkit

QLD Specialist List

In addition to the resources CTF Australia provides, below are some other useful documents from external organisations. 

 

 

Nerve Tumours UK 

 

Children’s Tumor Foundation USA 

 

NF1 

Information for Adults

New Diagnosis Guidebook 

Information for Teenagers 

Information for Teenagers 

Information for parents 

 

Information for Parents 

Learning Guidebook 

Information for Teachers 

 Information for teachers 

Information for Employers 

 

Information for Doctors and other Health Care Providers 

 

NF2 

What is NF2? 

New Diagnosis Guidebook 

Schwannomatosis 

 

What is Schwannomatosis? 

New Diagnosis Guidebook 

 

Neurofibromatosis, Inc. California 

NF Buddies: A Child’s Perspective of NF

 

Share with your GP

The 2012 NF1 Review Checklist

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: http://www.chronicpainaustralia.org.au/) or the Australian Pain Management Association (Link to: http://www.painmanagement.org.au/) for information relevant to Australian residents.

The Job Access (Link to: http://www.jobaccess.gov.au/) 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.