BTAA Patient Education & Information Forum - October 2022
Organised by Brain Tumour Alliance Australia (BTAA) and sponsored by The Brain Cancer Group, the Patient Education and Information Forum was held at the Hilton Brisbane Hotel on Sunday, October 16th as part of COGNO 2022.
The forum was an opportunity for patients, families, and their supporters to hear from international and national experts in brain cancer treatment, research and support.
The forum was facilitated by TBCG’s Neuro-Oncology Nurse Practitioner Marina Kastelan and was also streamed online for interstate attendees.
Please follow the link below to access the video playlist of the BTAA Patient Education and Information Forum.
Oligodendroglioma Education Day Webinar - March 2022
This event was designed to inform and answer questions by patients, health professionals, carers and family members of those diagnosed with Oligodendroglioma, a primary central nervous system tumour.
A virtual event run by The Brain Cancer Group, Care 2 Cure, and co-hosted with Brain Tumour Alliance Australia (BTAA) on 4th March 2022.
Watch the complete video of the webinar here.
BTAA Patient Education & Information Forum - October 2021
A virtual event run by Brain Tumour Alliance Australia (BTAA) and The Brain Cancer Group, Care 2 Cure, held in conjunction with the 13th COGNO Annual Scientific Meeting on 24 October 2021.
Watch the complete video of the forum here.
Meningioma Patient Education Day - July 2021
A virtual event run by The Brain Cancer Group, Care 2 Cure, and co-hosted with Brain Tumour Alliance Australia (BTAA) on 30 July 2021.
Watch the complete video of the forum here.
Sydney Patient Education and Support Forum - May 2021
Hosted by NSW Neuro-Oncology Group (NNOG) and Brain Tumour Alliance Australia (BTAA).
Wesley Conference Centre, 220 Pitt St Sydney - 20 May 2021.
With support from NSW Cancer Institute, The Brain Cancer Group, The Cancer Council, and Cure Brain Cancer Foundation.
And special thanks to the William Lazaris bequest.
Watch the complete video of the forum here.
Brain Cancer Patient Education and Support Forum October 2019
Held at the ICC Sydney in Darling Harbour on 27 October 2019 in conjunction with the 12th COGNO Annual Scientific Meeting.
Links to presentation slides:
Colin Watts - Advances in Neurosurgery
Lynette Masters - Advances in Neuroimaging
Helen Shih - Advances in Meningioma Management
Judith Lacey - Advances in Supportive Care for Brain Cancer
Andrew Cole - Driving with Brain Cancer
Seema Nagpal - Advances in Systemic Therapy for Brain Cancer
Brain Tumour Support and Education Forum May 2019
Held at the Wesley Centre in Sydney in May 2019.
Link to videos here.
Brain Tumour Support and Education Forum May 2018
Held at the Wesley Centre in Sydney in May 2018.
Links to videos here.
GLIOLAN® (aminolevulinic acid hydrochloride) is an orally administered drug used for the visualisation of certain brain tumours (particularly glioblastoma multiforme) during tumour surgery.
Bevacizumab (Avastin and Mvasi)
Avastin (Bevacizumab) was listed on the Pharmaceutical Benefits Scheme (PBS) on 1 August 2019, but on 1 June 2021 it was replaced by Mvasi, a biosimilar brand of Bevacizumab.
It is listed under Section 100, as a medicine funded through the Efficient Funding of Chemotherapy (EFC) Program.
See the Department of Health information flyer in relation to Mvasi.
The Pharmaceutical Benefits Advisory Committee (PBAC), has recommended that Australians with recurrent and refractory glioblastoma (GBM) - a common and aggressive form of brain cancer, should have access to Bevacizumab via the (PBS) regardless of their ability to pay.
The PBAC has acknowledged that treatment options for patients with recurrent GBM are currently extremely limited, and no new therapies or treatments have been approved and placed on the PBS since Temozolomide in 2007, which only provides an effective treatment for a proportion of patients, and statistical improvements in Progression-free Survival (PFS) and Overall Survival (OS).
Bevacizumab is not seen as a cure either, but it may provide relief from some symptoms, and may potentially improve PFS and OS as well. It has been noted that Bevacizumab is not without significant side effects, and has not always produced positive outcomes. BTAA understands the Bevacizumab may help patients with relapsed or recurrent glioblastoma that have progressed on, or are intolerant to Temozolomide.
Selected useful web resources
- Cancer Directory - The Cancer Council NSW cancer information website provides the Australian community and health professionals with a credible and comprehensive online directory of trusted Australian cancer care publications and resources published since 2008. The Website provides direct links to resources on other websites that meet quality criteria determined by Cancer Council NSW.
- Health Direct (a FREE* 24-hour telephone health advice line staffed by Registered Nurses to provide expert health advice. BTAA has not yet evaluated the nurses' level of knowledge about brain tumour-specific health challenges).
- Brain Tumour Healing Program Canadian website ( Finding Light in the Darkness: Reclaiming Wholeness after a Brain Tumour, A "Skills for Healing" retreat documentary)
International BT organisations
- International Brain Tumour Alliance
- The American Brain Tumor Association
- The Brain Tumour Foundation of Canada
- The Collaborative Ependymoma Research Network (CERN) - and handbook
Brain tumour research organisations
- The Australian Genomics and Clinical Outcomes of Glioma (AGOG)
- Brain Cancer Biobanking Australia
- The Brain Centre Collaborative
- The Brainchild Foundation
- Brainlink Services Inc
- Brizbrain and Spine Research Foundation
- The Brain Cancer Group (formerly SNOG)
- The Cooperative Trials Group for Neuro-Oncology (COGNO)
- The Cure Brain Cancer Foundation
- The Kolling Foundation
- The Lowy Cancer Research Centre
- The Mark Hughes Foundation
- Neuro Oncology Information Network (NOgIN)
- Neurosurgical Research Foundation (NRF)
- The Queensland Brain Institute
- Royal Melbourne Hospital Neuroscience Foundation
- The Tony Lucas Research Grant
Australian Brain Tumour related consumer groups
- Brain Child Foundation (paediatric support)
- The Cure Starts Now
- Dainere’s Rainbow Fund
- The Robert Connor Dawes Fund
- The James Crofts Hope Foundation
- The Peace of Mind Foundation
General Cancer Groups
- Children's Cancer Australian Government Website
- The Telethon Kids Institute (WA)
- The Warwick Cancer Foundation
- The Starlight Foundation
- Livewire - Starlight Foundation social media group Online community designed just for young people living with a serious illness, chronic health condition or disability, and their families. It is a safe online space where members can connect and share experiences with others who understand what they are going through.
- The Make a Wish Foundation
- The Cancer Council of Australia
- The Cancer Research Foundation
- The Children’s Cancer Institute
- The Children's Leukaemia & Cancer Research Foundation (Inc)
- The Children’s Research Foundation
Brain Tumour Health Professionals
BTAA is developing a register of Australasian professionals with a professed interested in brain tumour treatment.
We offer no rating as to who might have more experience or knowledge from among these specialists but we do encourage patients and caregivers to ask their initial specialist extensively about their interest and experience in the area that is relevant for your care. It is also important to remember that you have a right to a second opinion.
Developing a list of specialists is a very difficult task because many of the oncologists, for example, do not specialise solely in brain tumours but work in other cancer fields and many of the neurosurgeons undertake other neurosurgery apart from craniotomies for brain tumours.
A list of Royal Australasian College of Surgeons is available here.
Search for a medical oncologist here. (Information is currently being updated)
Health Complaints Commissioners
Any complaints about the medical service you receive should be directed to your local health complaints commissioner.
Links to the websites for health care complaints commissioners in Australia and New Zealand are available here:
- Australian Capital Territory
- New South Wales
- New Zealand
- Northern Territory
- South Australia
- Western Australia
beyondblue Directory of Medical and Allied Health Practitioners in Mental Health
Click here to access this directory. Depression can be a problem associated with any serious illness. Please note the disclaimer on the BeyondBlue website.
Last Update 29 April 2019
Email firstname.lastname@example.org for suggestions to update this list and to let us know about new resources.