Brain Tumour Alliance Australia (BTAA) was established in 2008 and is run by volunteers. BTAA aspires to be the national brain tumour support organisation, focussing on support for the brain tumour patient and their carers, and the oft-forgotten families of patients, which brain tumours affect.
BTAA is a not for profit organisation and is run by a group of volunteers; brain tumour patients, and current and former carers. BTAA is concerned about all brain tumours (neoplasms) affecting the central nervous system (CNS), which includes the meninges, brain, and spinal cord.
Paediatric and adult tumours, malignant and so-called benign tumours, and metastatic brain tumours are all supported. BTAA believes that brain tumours represent a neglected illness, which places enormous challenges on the patient and family and requires a unique response, and a much increased research effort supported by the community and governments.
BTAA has a broad membership and subscriber database, that includes health professionals and academics with a particular interest in brain tumours.
BTAA works closely with the International Brain Tumour Alliance (IBTA), including in its promotion of the annual International Brain Tumour Awareness Week, and the annual Walk Around the World for Brain Tumours.
How We Help
BTAA seeks to provide peer support to people living with a brain tumour. We extend this to their carers, their families, and friends. BTAA provides information resources for newly diagnosed patients and can assist with referrals to the most appropriate support services in their area.
We operate a support line - 1800 857 221 (a free call in Australia) where you can speak to someone who knows what it is like to travel the brain tumour journey and receive peer support.
We require all prospective brain tumour support representatives to undertake appropriate training.
BTAA also seeks to:
- Support the professional development of health care professionals with a particular interest in brain tumours;
- Guide improvements to brain tumour research, treatment and care;
- Ensure treatment options are based on the best available evidence. We seek to work with the pharmaceutical industry, where appropriate, in ensuring access by more Australian brain tumour patients to subsidised and approved therapies, and participation in industry and investigator-initiated clinical trials. BTAA will seek to offer input to the design of such trials so that the best interests of the patient are always respected;
- Make recommendations to government about brain tumour policy and priorities;
- Raise awareness in relation to public policy issues of concern to the brain tumour community, including the implications of the leading single cause of cancer-related mortality in children and young to middle aged adults in Australia;
- Advocate to governments to support increased access to specially trained brain tumour care-coordinators to act as patient advocates, coordinating care for people with brain tumours.
New Zealand: BTAA welcomes the involvement of interested people from New Zealand because much can be done in the area of Trans-Tasman co-operation.
Research Fund-raising: BTAA will not seek to become a fund-raising organisation for brain tumour research because of a belief that there is a range of such bodies already in existence that undertake this role very successfully. BTAA has compiled a list of 16 charitable organisations and research organisations for those who seek a suitable recipient for bequests and donation, but encourages donations to BTAA to underpin its support role.
Consumer representatives: BTAA will seek to work with other disease-specific cancer groups and umbrella bodies and will require all prospective brain tumour consumer representatives to undertake training. BTAA will support and respect the established position of the various Cancer Councils.
Establishment: BTAA Inc has been registered as an Association incorporated in the ACT, registration number AO4837.