Our Support Services Team is dedicated to developing resources that suit the needs of our community. In addition to the general resources provided below, you can contact us for more specific resources related to various health implications caused by NF.
Keep up with the latest information about NF by subscribing to our newsletter and following us on social media (@ctfaustralia).
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health management kit
This personalised 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.
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 see the contents for NF1
Click HERE to see the content for NF2-SWN and SWN
(Please bear in mind that you may not need everything on the list, so you kit will be tailored to you)
Each health management kit is tailored to your individual needs and is available by contacting our Support Services Team on (02)9713 6111 or support@ctf.org.au or by requesting yours below
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.
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.
We would like to thank them for allowing us to share their resources on our site and with our community.