BTAA Logo 2026

Resource Directory

General

 

Brain Tumours Online

 

Brain Tumours Online (BTO) is a comprehensive resource directory for brain tumour patients and their care givers. It was co-designed by patients, carers and health care professionals to provide reliable information, self-care tools, and a supportive community for Australians affected by brain tumours.

 

BTO brings together the most trustworthy and up to date information on brain tumours from Australia and the world in one place so you can easily find the right information at the right time. It also provides access to evidence-based tools to help manage some of the challenges associated with a brain tumour.

 

https://braintumoursonline.org/

 

Patients’ Charter of Rights

The BTAA supports the  Brain Tumour Patients’ Charter of Rights agreed by 75 organisations. It helps initiate positive change in the care of people diagnosed with brain and central nervous system tumours. With the goal of achieving the best possible health and quality of life for adults, children, and adolescents living with brain tumours by encouraging and supporting quality standards, policies, and practices.

The Charter enumerates ten fundamental categories of “rights” for brain tumour patients that every country should strive to deliver:

 

Acknowledgment and Respect

  1. Appropriate Investigation of Signs and Symptoms
  2. A Clear, Comprehensive, Integrated Diagnosis
  3. Appropriate Support
  4. Excellent Treatment and High-Quality Follow-Up Care
  5. The Care Relationship
  6. Supportive/Palliative Care
  7. Rehabilitation and Wellbeing
  8. Medical Information and Privacy
  9. Appropriate End-of-Life Options and Care

Source: Brain Tumour Patients Charter of Rights FINVER PBL 020720

 

Brain Tumour Patients Charter of Rights

More resources

Treatment

 

BTAA Fact Sheets – Treatment

Put treatment related fact sheets here https://www.btaa.org.au/fact-sheets

Treatment options https://www.btaa.org.au/sites/default/files/2019-04/FS15to18.pdf

It’s Okay to Ask

BTAA has produced a booklet that is useful to print and review and to take with you as you navigate your diagnosis and treatment. It covers some disturbing facts about brain cancer and includes questions you may want to ask your healthcare tea about your brain tumour and treatment.

  • Setting the scene on how much you want to know
  • How to talk to your doctor
  • Diagnosis
  • What to expect in the future
  • The Healthcare team
  • Support (Financial and Mental)
  • Treatment and management
  • What to expect after treatment

This resource is available in multiple languages, see CALD resources.

 

Your Brain Tumour Pathway

This plan has been designed to help you navigate the brain tumour journey. The brain tumour profile is designed to help in your discussions with your treatment team about your tumour type, grade, location and treatment plan. The document provides an overview of treatment pathways and supportive care options.

This resource is available in multiple languages, see CALD resources.

Optimal care pathway for people with high-grade glioma

The optimal care pathway describe the standard of care that should be available to all cancer patients treated in Australia. The pathways support patients and carers, health systems, health professionals and services, and encourage consistent optimal treatment and supportive care at each stage of a patient’s journey.

Seven key principles underpin the guidance provided in the pathways: patient-centred care; safe and quality care; multidisciplinary care; supportive care; care coordination; communication; and research and clinical trials.

Link: https://www.cancer.org.au/assets/pdf/high-grade-glioma-2nd-edition – Cancer Council

The Impact of a Brain Tumour Diagnosis (Fact Sheet 33)

Link: Fact Sheets 33 to 34 – The Impact of Brain Tumour Diagnosis

 

Survivorship

 

Building the Bridge – A guide to Life with Brain Cancer

Building the Bridge was created in partnership with patients, families and neuro-oncology health professionals. It is designed is as a navigator to the challenges and issues facing people as they begin to re-engage with everyday life after a diagnosis of brain cancer.

This is a survivorship resource, a guide to help people understand some of the long-term impacts of diagnosis, what might help, who might help and how they can take action to live their best possible life with brain cancer.

Link: https://buildingthebridge.com.au/

 

Survivorship Diary

The Survivorship Diary is a free resource for brain cancer patients and their families — designed for patients, by a patient. Created by Cass alongside her dear friend Ana, the diary was built to help people navigate every stage of treatment and the many questions and challenges that come with living with brain cancer.

Link: https://markhughesfoundation.com.au/the-survivorship-diary