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Australian Brain Tumour Organisations

Patient Forum, Sydney, Friday May 8th 2015. Register now at the Brain Tumour Alliance Australia site, for program details and accommodion support.


Please consult Brain Tumour Australia Information for more information and resources relating to Brain Tumours

In 2008 a group of interested organisations, Government funded and Not-for-Profits met in Sydney at a Round Table Workshop to establish a network to provide services to individuals, patients and families when a brain tumour diagnosis occurs. The group included the following; BrainLink Services Ltd ;Brain Foundation National and New South Wales; Centre for Minimally Invasive Neurosurgery; Clinical Oncological Society of Australia [COSA]; Cure for Life Foundation [CLF]; Medical Oncology Group of Australia [MOGA]; NSW Cancer Institute- Neuro-Oncology Interest Group; Cancer Council of NSW; Sydney Neuro-Oncology Group [SNOG]; Occupational Therapy NSW; Redkite

For further information and support

The Sydney Neuro-Oncology Group SNOG: Tel: (02) 8425 3369
The Sydney Neuro-Oncology Group is a charitable organisation that aims to improve the management of brain tumours through targeted research, information sharing and constant scrutiny of treatment options. SNOG has set up a number of support groups around Sydney for those who have been diagnosed and information about the groups and the other services available can be found on their web site

The Cancer Institute of NSW
NSW Oncology Groups were established to ensure specialised clinical care is optimally coordinated throughout the State. NSWOG provides expert guidance for the development of specialised cancer care in NSW

Brain Tumours and Driving – information guides
Developed by NSWOG Neuro-Oncology experts in neurosurgery, medical oncology, radiation oncology, occupational therapy, rehabilitation, nursing and allied health members compiled two information brochures which were designed to educate and inform both clinicians and patients about driving after a brain tumour.

Guide for Clinicians
Guide for Patients and Carers     

Factsheets: Managing changes to thinking and behaviour after diagnosis of a brain tumour NSWOG Neuro-Oncology developed 16 fact sheets that provide important information about many of the thinking and behaviour changes people may experience after a brain tumour.

  Anger: Are you having trouble with your temper
Stress & Anxiety: Are you feeling tense, nervous or overwhelmed?
Attention and Concentration: Are you having difficulty staying on task
Communication: Can’t find the word or talk too much?
Disorientation/Appearing Confused: Feeling lost, not knowing where you are…?
Being Self-Centred (Egocentricity): Do you only think about yourself and find it hard to see other people’s point of view…?
High Level Thinking or Executive Impairments: Can’t seem to think straight…?
Fatigue: Do you feel exhausted or tired a lot of the time…?
Impulsivity: Do you sometimes act without thinking…?
Inappropriate social behaviour/ inappropriate sexual behaviour: Can’t seem to say or do the right thing at the right time…?
Lability: Do you feel that you are on an emotional roller coaster…?
Apathy/Lack of motivation: Can’t seem to get yourself going…? Don’t seem to care about anything…?
Neglecting Personal Care / Looking after yourself: When how you look no longer seems to be important…
Memory: Do you keep forgetting things…?
Low Mood - Depression: Do you feel sad, tearful, can’t seem to enjoy yourself…?
Perservation: Do you repeat yourself or get stuck like a broken record...

Resource Sheets:

Anger Management
  Checklist for getting ready
Goal Setting
How to Cope with Depression
Activity Scheduling
Memory Tips
Mindfulness exercise
Problem solving
Stress Management and relaxation techniques
Stress Management
Occupational Therapy NSW
Driving assessments requested by the Road and Traffic Authority (RTA) Members of the public who have been requested by the RTA to undergo an Occupational Therapy Driving Assessment can search the on line facility Private Practice Directory on the above page to find a private occupational therapist specialising in driving assessment. Waiting lists and fees of individual therapists will vary.

The Cancer Council of NSW Understanding Brain Tumours has prepared a specific Brain Tumour resource in their Understanding Cancer Series. The organisation held the first Australian Brain Tumour Week in 2010 and plans to make this an annual event. They also plan to launch a dedicated Brain Tumour website during 2011

The Cancer Council of QLD Brain Tumour Support Service has prepared a specific Brain Tumour resource in the Understanding Cancer Series.

Brain Foundation National and New South Wales Tel: 1300 886 660
was established by members of the Australian Association of Neurologists and the Neurosurgical Society of Australasia to reduce the incidence and impact of disorders of the brain, spinal cord and nervous system through the provision of support, community education and research.

Cure for Life Foundation
Aims to raise funds to advance Brain Tumour research and hopefully assist in finding a cure

Centre for Minimally Invasive Neurosurgery
provides information for both Medical Professionals & their patients. When patients and their families know more about their condition and treatment options they can take a more involved role in decisions regarding their care, contributing to better medical outcomes


BrainLink Services Ltd (Melbourne)
Provides resources & information about services to people with Acquired Brain Injury, including people with brain tumours.

The Cancer Council Victoria: Understanding Brain Tumours
Tel: (03) 9635 5000

The Victorian Brain and Spine Centre (VBSC) provides a complete range of acute and elective Neurosurgical care. Through a home base at St Vincent’s Hospital campus in Fitzroy Melbourne; regular country clinics are performed on a regional basis by each of our neurosurgeons

Australian Pituitary Foundation Ltd Tel: 1300 331 807
The Foundation has developed networking and educational resources to support children, adults and families affected by pituitary tumours and disorders.

Clinical Oncological Society of Australia [COSA]
As the peak national body representing health professionals working in cancer control, COSA advises, leads and advocates for policy and practice change to improve, develop and maintain high-quality, multidisciplinary clinical management and care of people affected by cancer. COSA provides an opportunity for health practitioners with an interest in a specific type of cancer eg. Brain Tumours to meet with like-minded colleagues to pursue better outcomes for patients

Occupational Therapy Australia
Occupational therapists work with people of all ages from infants to the aged. OTs who conduct driving assessments have specific training to do so. They make recommendations to AustRoads including the various Australian Road & Traffic Authorities regarding a person’s fitness to drive and any conditions which should be placed upon a person’s licence.   

provides real and practical support services to children and young people with cancer and their families. Support is provided from the moment of diagnosis, through treatment and in hospital, and on return home to the community.

brightens the lives of seriously ill and hospitalised children, and their families, throughout Australia; programs are delivered both in and out of hospital, providing positive distraction to children in their time of need.

Make a Wish
grants the Wishes of children with life-threatening medical conditions to enrich the human experience with hope, strength and joy

Medical Oncology Group of Australia
The Medical Oncology Group of Australia (MOGA) is the peak representative body for medical oncologists in Australia. The Association works closely with Government, health organisations, affiliated international associations and societies, industry, consumer advocacy groups and learned colleges throughout Australia to improve and develop the profession of medical oncology and the management of cancer nationwide

State & Territory Cancer Council support services & resources
For more information about support services and resources in your area, please contact the Cancer Helpline on 13 11 20 in your home state OR click on the State & Territory Cancer Council links below:

Australian Capital Territory
New South Wales
Northern Territory
South Australia
Western Australia

Brain Tumour Alliance Australia
works with patients and their families, clinicians, governments, and non-government agencies on a range of support, advocacy, and informational projects.

OzBrain Tumour
A Web based/Internet support group for patients and care givers. Some of the group members have lots of experience, all of them have some experience — the idea here is that the learning and support and friendship with people who share your situation may give you strength and confidence to deal with your own situation.

South Australia
Adult Brain Cancer Support Association, contact Andy Stokes

Western Australia
Brain Tumour Association Western Australia check their website for further information on services provided

James Crofts Hope Foundation provides support and assistance to adults, children and their families. Consult the website for further information

Please Note
The above links are provided as a service to the Wider Brain Tumour Community.

Numerous requests have been made to add additional websites to this list, however it should be remembered that all should be considered on their own individual merit by web browsers seeking information.

The BTAI advisory committee are not able to offer endorsement to non-participants of the original meeting or to information contained in their sites



Please direct feedback or questions to the webmaster.

Postal Address:
PO Box 47
Kotara NSW 2289