General Resources

Our Support Services Team is dedicated to developing that suit the needs of our community, so keep an eye on this page and our social media channels (@ctfaustralia) for updates.

ABOUT US

ABOUT NF

NF1

CTF US RESOURCES

NF2

NF2 Brochure (English)
Gammer Knife Surgery (Webinar Summary)
Biosimilar Medicines: the basics (Australian Government)

CTF US RESOURCES

SCHWANNOMATOSIS

Schwannomatosis Brochure (English)

CTF US RESOURCES

OTHER RESOURCES

NF Hero Colouring Penguin
Health Management Kit (English)
This kit contains information about NF as well as sections for you to keep track of all of your health information and history, upcoming medical appointments, scans and reports. The kit also contains general information on NF and NF Specialists and services in your state. Request yours below!

First Name *

Last Name *

Email *

Phone *

State *

NF Type *

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For children, depending on your child’s age and family circumstances, the Health Kit will contain resources on learning difficulties, information for schools, FAQs, Talking to Children about NF, Transitioning to Adult Care Checklists and a range of other info.

Click HERE to download a copy of Contents for NF1

Click HERE to download a copy of Content for NF2

(Please bear in mind that you may not need everything on the list, so you kit will be tailored to you)

It will be tailored to your individual needs and is available by contacting our Support Services Team on (02)9713 6111 or support@ctf.org.au

WELLBEING WEBINARS

FIND OUT WHAT IS COMING UP

Everything you need to know about the TiNT MEK Inhibitor Clinical Trial

Dec 2020

In this webinar we welcome paediatric oncologist at the Children's Hospital Westmead and clinical lead for the upcoming Australian TiNT MEK Inhibitor Clinical Trial, Dr Geoff McCowage.

This a unique opportunity to hear directly from the person who is responsible for ensuring this trial is made available to Australian and New Zealand patients and will cover the following topics:

What is a MEK inhibitor
How do MEK inhibitors work in NF
Prior research into MEK Inhibitors
Timing and eligibility criteria for the Australian TiNT clinical Trial

The Importance of Will & Estate Planning

Sep 2020

In this webinar NF1 mum and solicitor, Ellen Pacelli, and her colleague Malcolm Stoddart from Owen Hodge Lawyers take us through the importance of planning for you and your families future. If you cannot see the subtitles, these can be enabled in the settings.

NF1 – The Plastic Surgeon’s Toolkit

Feb 2018

Presented by Mr Mark Balwin, a Melbourne-based private plastic surgeon who has experience with removal of NFs via electro desiccation and other methods.

NF2 & Schwannomatosis

May 2018

Presented by Associate Professor Nigel Biggs a head and neck surgeon at St. Vincent’s Hospital in Sydney covering the latest treatment options for complications of NF2 and Schwannomatosis.

Download the transcript or watch the video below.

The Transition Process

March 2019

Presented by Dr Jane Ho & Fabienne Edema-Hildebrand regarding transitioning from paediatric to adult care.

DOWNLOAD THE WEBINAR TRANSCRIPT

The Research Process

July 2019

Presented by Dr Aaron Schindeler (CHW) and Dr Kristina Haebich (MCRI) outlining the process of developing an idea into a clinical trial. Dr Schindeler describes his study on Muscle Weakness in children with NF1.

INFORMATION SEMINARS

FIND OUT WHAT IS COMING UP

Sydney, 7 March 2020

International guest speaker Prof Michael Fisher, Chief of Neuro Oncology, Children’s Hospital of Philadelphia was joined by some of Australia’s leading NF specialists. The audience consisted of parents and individuals living with NF.

We have compiled a summary of each presentation for you to download and review.

INTERNATIONAL RESEARCH UPDATE - Prof Michael Fisher (CHOP)
TREATMENT OF SKIN IN NF1 - Associate Professor Mimi Berman (RNSH)
LEARNING DIFFICULTIES IN CHILDREN WITH NF1 - Dr Belinda Barton (CHW)
MEK INHIBITOR CLINICAL STUDY - Dr Geoff McCowage (CHW)
TREATMENT OF NF2 - Associate Professor Nigel Biggs (SVHS)

Melbourne, 22 September 2018

Click each link to view a video recording of each presentation.

The CTF is constantly updating our local resources, but we also recommend visiting our internationally affiliated organisations to check out their resource libraries.