Support Organisations

Patient Support by Geographic Area (Please select an option)

Australian Capital Territory

Brain & CNS Cancer Nurse Specialist

Brain & CNS Cancer Nurse Specialist at The Canberra Hospital Ph: 6244 4416.

BTAA’s Canberra peer-to-peer Support Group

BTAA's ACT and surrounding areas Support Group meets on the 4th Sunday of the month at the Yarralumla Southern Cross Club in the ward adjacent to the lounge. Ask at reception. The meeting commences at 11am followed by lunch/fish and chips at around 12.15pm. Please feel free to join us for either the support meeting or the lunch or both. The co-ordinators are: Pat Wynn and Billy Williams. Call 1800 857 221.  

Financial Support - Cancer support group ACT Eden Monaro

Contact Cancer support group ACT Eden Monaro Phone 02 6297 1261 or email csg2@bigpond.com 21 Cooma Street Queanbeyan. Each case is assessed on its merits. Can provide up to $2,500 for Pharmacy, Chemo, Food drink supplements, food/petrol, and/or gas/electricity. 

Queensland

Brain Tumour Support Service (QLD)

The Service provides: information about brain tumours, treatments, support agencies and rehabilitation services as well as practical support; regular information session in our Brisbane office, providing opportunities to meet with other people who have been impacted by a brain tumour and hear guest speakers including health pofessionals discuss topics of interest; and regular newslettes. View the Brain Tumour Support Servie newsletter online and other information here.

Phone: 13 11 20

Email: btss@cancerqld.org.au

Brisbane Brain Tumour Support Group

Peer support group that welcomes any patient with a brain tumour, carers or loved ones, to share their story and provide or receive support.  Meets on the 1st Thursday of each month (except January) at 10am - 12pm at Cancer Council Queensland, 553 Gregory Terrace. They are run independently but supported by the CCQ.  Braintsg@gmail or call 13 11 20 for more information 

There is also a Brain Tumour Support Nurse at the Princess Alexandra Hospital in Brisbane - Emilia Hunt, Ward 2C, Neurosurgery, Phone 07 3176 2137. Email: btan_pah@health.qld.gov.au

Count me in

‘Count ME in’ is a social meet up for people aged in their 20's, 30’s and 40's who have been diagnosed with cancer. Come along to our get together, meet new people, grab a drink and a bite to eat & enjoy some friendly conversation.

Date: Will be confirmed upon contact
Time: 9.30 am
Venue: Meraki Whole Food Kitchen
Address: 55 Brooke Ave, Southport QLD 4215

For further information please contact Raechel on 0437 086 959
Find our group on Facebook, search: Count ME in

PalAssist

The service, operated by Cancer Council Queensland, can be contacted 24 hours a day, seven days a week. PalAssist is a no cost telephone and online service which offers immediate advice and emotional support for patients, carers, family and friends. Palliative care is all about improving the quality of life for patients facing life threatening illness and their families. Ph. 1800 772 273 Website http://palassist.org.au/ 

Sunshine Coast Brain Tumour Support Group

Held in Buderim –

The Group meets on the last Friday of every month 10.30-12.30 @ Bloomhill Cancer Care, 58 Ballinger Road Buderim

Contact admin@bloomhill.com.au for further information. 07 5445 5794

The Newro Foundation

From information supplied by the practice: The Newro Foundation (formerly BrizBrain and Spine) has employed Vivien Biggs RN, for several years as a Brain Tumour Nurse, and who is now Australia's first Neuro-Oncology Nurse Practitioner. Vivien sees patients independently in hospital and in clinic, before surgery, throughout hospitalization, and thereafter. She provides education and support and is a first point of contact for patients and their families. She organizes and coordinates care for Brain Tumour patients and works closely with the Neurosurgeons as well as other treating specialists (medical and radiation oncologist and others) and GPs. Vivien can be contacted on (07) 3833 2500.

Name: Vivien Biggs RN

Phone: 0738332500

New South Wales

BTAA’s Sydney peer-to-peer Support Group

We meet the first Friday of the month at Chris O'Brien Lifehouse in Newtown

Come to the main reception and you will be directed to our room.

Please come if you can. We would love to meet you.

Chris O’Brien Lifehouse is located across the road from the Royal Prince Alfred Hospital on Missenden Road, Camperdown, just three kilometres from the Sydney CBD. Lifehouse is easy to get to on foot, by car or using public transport.
See how to get there here http://www.mylifehouse.org.au/about-lifeho…/how-to-get-here/.

The co-ordinators are: Alice Parsons, Gerry Tye, Virginia Ryan, Di Pooley, and Michaela Truppel.

Name: Di Pooley

Phone: 0423597212

Email: SydneySupportGroup@btaa.org.au

Name: Alice Parsons

Phone: 0412286778

Cancer Council Telephone Support Groups - for people living with a brain tumour

Cost of a local call 1300 755 632 Monday - Friday 9am - 5pm or email tsg@nswcc.org.au 
 
The Cancer Council NSW provides a free national telephone support group held on the FIRST and THIRD Monday of each month.   This is the opportunity for you to talk with other people living with a brain tumour in a group.
There is also a Telephone Support Group for Carers held on the 2nd and 4th Wednesday of each month 1.30-2.30pm (AEST)
 
All you need is a telephone, an hour and a quiet space from anywhere in Australia and Cancer Council will connect you to the group. 
 
You need to call 1300 755 632 to find out more and register.

Gosford/Wyong

Name: Colleen Stevens, Uro/Neuro Cancer Nurse Coordinator

Phone: 0243202187

Address: Gosford/Wyong Hospitals, PO Box 361, Gosford, NSW 2250

Hunter Brain Tumour Network

The Hunter Brain Tumour Support Network meets on the first Wednesday of each month at a Central Newcastle meeting point.  If you are a patient, carer, family member or health professional and would like to attend, or have more details, please call the co-ordinators, Kaye Duffy, 0413275853, or Laraine Cross, Social Work Department, Calvary Mater Hospital, Waratah. Meetings are informal and patients, family members, carers and those whose lives have been impacted by a brain tumour are welcome. The interest of health professionals is appreciated in referring people. 

Members of this support group maintain a very useful website called Brain Tumour Australia Information, with a range of useful and practical Fact Sheets. www.btai.com.au

Name: Kaye Duffy

Phone: 0413275853

Name: Laraine Cross

Address: Social Work Department, Calvary Mater Hospital, Waratah

Liverpool Hospital

The Dept of Neurosurgery and Cancer Therapy at Liverpool Hospital hosts a 2nd monthly education and support programme for people diagnosed with a brain tumour.

The meetings focus on various topics and provide opportunities for attendees to share experiences and discuss issues of concern in a supportive environment while enjoying light refreshments. Feel free to bring a support person along.

Dates: 2nd Monthly on Tuesdays

Time: 10 am til 12 midday

Venue: Seminar Room 2 - Education Centre Liverpool Hospital

Download the program 

Name: Theresa Simpson (Oncology Social Worker)

Phone: 0287385224

Name: Kylie Wright (Quality and Accreditation Manager)

Phone: 0287388415

Quest for Life Foundation

Quest for Life Foundation has been running workshops and residential programs for people and their families living with cancer for over 30 years.

 

Name: Candice Piper

Phone: 1300941448

Email: info@questforlife.com.au

Address: 13 - 33 Ellsmore Road Bundanoon NSW 2578

Link: https://www.questforlife.com.au

The Brain Cancer Group (formerly SNOG)

North Shore Private Hospital Contacts: 02-84253369

Name: Marina Kastela (Neuro Oncology Care Coordinator)

Phone: 0284253610

Email: kastelanm@ramsayhealth.gov.au

Westmead The Neuro-Oncology Information Network “NOgIN”

The Neuro-Oncology Information Network “NOgIN” is a support and information group for patients/carers from Westmead Hospital and Westmead Private Hospital who have had treatment for brain tumours. We also welcome any patients/carers from outside our area.

Please access information at: www.westmeadprivate.com.au or our Facebook page: “NOgIN”

Name: Diane Lear, Clinical Nurse Consultant Neuroscience

Phone: 0408 184 8

Email: diane.lear@health.nsw.gov.au

Address: Westmead Hospital, Hawkesbury Road, Westmead NSW 2145

Name: Emma Everingham Clinical Nurse Consultant Neuroscience

Phone: 0288378926

Email: everinghame@ramsayhealth.com.au

Address: Westmead Private Hospital Cnr Mons & Darcy Roads, Westmead NSW 2145

South Australia

Adelaide Brain Tumour Support

We are a small informal support group in Adelaide and meet for coffees and other activities. Please see our Facebook page : Adelaide Brain Tumour Support . For more information Ph : 1800 857 221

Adult Brain Cancer Support Association (South Australia)

Run by Andy and Rosel Stokes. See their Facebook

Victoria

Ballarat Regional Integrated Cancer Centre Wellness Centre Brain Cancer Support Group

If you are a brain cancer patient, carer, friend or family member, then this is the support group for you.

The support group meets the last Tuesday of the month at the BRICC Wellness Centre, Ballarat Base Hospital, 1 Drummond St N, Ballarat Central VIC 3350. Time:1.30pm to 3pm. Cost is free. To book, contact Simone Noelker, Wellness Centre Coordinator at BRICC Phone 53208614 Email: simonen@bhs.org.au

Name: Simone Noelker

Phone: 53208614

Email: simonen@bhs.org.au

BrainLink Services Ltd (Melbourne)

BrainLink Services Ltd (Melbourne) has advised: "We provide resources & information about services to people with Acquired Brain Injury, including people with brain tumours. We also keep a list of the (very few) support groups in Victoria, including our group in Blackburn for people with primary malignant tumours.

We also hope to start another group next year, for people with benign tumours.

Name: BrainLink Services Ltd

Phone: 1800677579

Email: info@brainlink.org.au

Address: The Nerve Centre 54 Railway Road Blackburn VIC 3130

Cabrini Health Brain Tumour Support Group

Cabrini Health runs a support group for anyone living with brain cancer, their friends and families.
Our group is facilitated by experienced Cabrini health professionals. This will include our neuro-oncology nurse coordinators and other specialist staff appropriate to the topic on the day.

Our topics covered vary each month and our group participants are involved with topic suggestions.
This group meets monthly (4th Thursday) at Cabrini Malvern, Ward 4 West.
You do not need to be a Cabrini patient to attend this group.
 

Name: Emma Daly - Neuro-Oncology Clinical Nurse Consultant

Phone: 0427586443

Email: neurooncology@cabrini.com.au

Address: Malvern Melbourne Victoria

Grey Matters

Grey Matters is support group for those living with a brain tumour, their family and friends. Grey Matters is affiliated with Cancer Council Victoria and associated with Melbourne Hospitals (including Royal Melbourne and The Austin). Meets 3rd Monday of the month at the Carlton North Library at 7pm for 7:30pm. Contact Janet - 0422 639 993.

info@greymatters.org.au

Hume RICS

Kathy Vickers is the Cancer Care Coordinator for the CNS tumour stream at Hume RICS: 107Hume Street, Wodonga, Vic 3690. Tel 02 6057 5206.

Name: Kathy Vickers

Phone: 0260575206

Address: 107 Hume Street, Wodonga, Vic 3690

Peace of Mind Foundation

Peace of Mind Foundation (POMF) was created to give support, courage and community to brain cancer patients, carers and their loved ones. Peace of Mind provides financial aid grants, in home services, funded counselling and face to face support groups for Victorian families. They also host annual brain cancer retreats for patients and carers across Australia. POMF holds a brain tumour support group meeting in Geelong. Meetings are held every second Monday of the Month at the Andrew Love Wellness Lounge, Andrew Love Cancer Centre, Geelong.  

Contact details:

Name: Bec Picone

Phone: 0411382457

Email: bec@peaceofmindfoundation.org.au

Link: http://www.peaceofmindfoundation.org.au

Royal Melbourne Hospital

There is also a shared brain tumour care coordinator at Royal Melbourne Hospital.

Name: Marcia Fleet

Phone: 0393424589

The Brain Tumour Support Service

The Brain Tumour Support Service is based at the Olivia Newton-John Cancer Centre.

Austin Health provides a range of services to people affected by the diagnosis of a primary brain tumour including a monthly support group, information/education programs, individual support appointments and support for carers.

The Brain Tumour Support Group is held on the 2nd Wednesday of the month 11am-1pm at the Olivia Newton-John Cancer Wellness & Research Centre, Level 3, 145 Studley Road, Heidelberg. Contact person is Dianne Legge (Brain Tumour Support Coordinator) 9496 3315 or btso@austin.org.au

The Brain Tumour Support Service is open to anyone affected by the diagnosis of primary malignant brain tumour:

patient, carer, family, friend & does not need to be a patient of the ONJ Centre or Austin Health.

Anyone can attend, as long as they can get there.

Wellness & Supportive Care email contact wellness@austin.org.au

Name: Dianne Legge (Brain Tumour Support Coordinator)

Phone: 94963315

Email: btso@austin.org.au

Western Australia

Brain Tumour Association of WA

 

 

Phone: 1800857221

Link: https://www.facebook.com/BTAofWA/

James Crofts Hope Foundation

The Foundation is committed to providing support and assistance to adults and children diagnosed with brain tumours, their carers and family, and also to the advancement of the treatment, and research of these conditions. Home or hospital visits can be arranged with a call to the secretary John on 0428247319. Counsellor in Perth suburbs available on request.

Name: John

Phone: 0428247319

Link: http://www.jamescroftshopefoundation.org.au/

Sir Charles Gairdner Hospital

Medical Oncology and Radiation oncology inquiries 6383 3000, MRI Inquiries 6457 7900. The WA Cancer and Palliative Care Network has a cancer care coordination service whose webpage can be accessed here.  The contact numbers for the neuro oncology cancer nurse coordinator (Anne King) ph: 0400 021649 or office number 08 92220202 Email:  anne.king@health.wa.gov.au

Name: Anne King

Phone: 0400021649

Email: anne.king@health.wa.gov.au

National

Cancer Council Online Community

www.cancercouncil.com.au/OC

The Cancer Council Online Community offers people currently living with cancer, cancer survivors, families, carers and the wider cancer community the opportunity to connect, share experiences and find information and support in a safe forum.
Available 24/7 through blogs, discussion forums and support groups, members can discuss their experiences and share stories, tips and coping strategies to help normalise concerns and reduce social isolation.

International

The International Brain Tumour Alliance

(IBTA)maintains an extensive worldwide listing of patient groups here.

Other groups of interest are available here

Associated Organisations

Acoustic Neuroma Association Australia

An Acoustic Neuroma (or Vestibular Schwannoma) is a benign encapsulated tumour which arises from the 8th cranial nerve. The 8th cranial nerve is actually two separate nerves, one associated with balance and the other with hearing and it is here that this tumour usually arises from either one of these nerves in the bony internal auditory canal between the inner ear and brain. The 7th nerve which services facial movement also passes through this canal as do important blood vessels. These tumours are usually slow growing but as they expand they begin to press on the hearing, balance, and other nerves. They can then extend into the area at the base of the brain and press on the vital structures of the brain, which can be life threatening.

Website: http://www.anaa.org.au/what-is-an-acoustic-neuroma/

Australian Pituitary Foundation Ltd

A national organisation. The Foundation supports and educates people impacted by pituitary disorders.  It conveys awareness and provides relevant information to the general and medical communities and acts as a collective voice for pituitary patients and their families. Ph 1300 331 807. Email: support@pituitary.asn.au Website: www.pituitary.asn.au