Directory of Chronic Illness Alliance Members’ Web Sites
NB: The links to the members’ websites will open up in a new window.
Alzheimer’s Australia Victoria
Ankylosing Spondylitis Victoria
Asbestos Council of Victoria/GARDS Inc
Australian Leukodystrophy Support Group Inc.
Australian Pain Management Association
Cardiomyopathy Association of Australia Ltd.
Childrens Tumour Foundation of Australia
Crohns and Colitis Australia
Coeliac Victoria and Tasmania Inc
Continence Foundation Australia
Cystic Fibrosis Victoria
Diabetes Australia – Victoria
Emerge Australia (formerly ME/CFS Victoria)
Genetic Support Network Victoria
Goulburn Valley Primary Care Partnership
Haemophilia Foundation of Victoria
Health Issues Centre
Heart Foundation Victoria
Inner East Primary Care Partnership
Kidney Health Australia
Knox Community Health Service
Monashlink Community Health Service
MS Australia ACT/NSW/VIC
Ovarian Cancer Australia
Palliative Care Victoria
Pelvic Instability Association Inc
Post Polio Victoria
Prostate Cancer Foundation of Australia
Royal District Nursing Service
Scleroderma Victoria Inc
Stroke Association of Victoria
Stroke Foundation (The National Stroke Foundation)
Victorian AIDS Council
Alzheimer’s Australia Victoria is the peak body in Victoria for people living with dementia. It provides leadership in advocacy, policy, services and research. it is part of the national Alzheimer’s Australia federation.
Contact: Mr Jack Sach
Phone numbers 03 9816 5731
Ankylosing Spondylitis Victoria Inc peer support group is an organisation of people who wish to improve knowledge of AS and the ability to manage the condition. Our group embraces the goals and objectives of people and families living with Ankylosing Spondylitis.
Contact: Annie McPherson
Telephone: 0408 343 104
The Asbestos Council of Victoria (ACV) works to raise the level of asbestos awareness in the community, industry and at all levels of government.
Gippsland Asbestos Related Disease Support Inc (GARDS)
Provides support and information to sufferers, their families and carers. This includes home visits by GARDS volunteers, a telephone support service, and drop-in services at GARDS’ office. GARDS Support also conducts meetings where guest presenters are invited to provide information about regional support services and other areas of interest and assistance. The meetings also provide a gathering place for experiences. GARDS Support is open to anyone exposed to asbestos or suffering from asbestos disease.
Asbestos Council of Victoria (ACV) Advocacy
The ACV is the organisational, activities and advocating arm of GARDS Inc.. Advocacy is focused on improving health support services and compensation arrangements to asbestos sufferers and their families, ensuring asbestos related issues are kept in the public eye and eventually, ridding our environment of asbestos.
Contact: Mrs Vicki Hamilton OAM
Address: PO Box 111, Moe Victoria 3825
Telephone: 0351 277 744 (all hours)
Fax: 03 5126 0354
Asbestoswise runs two suppport groups for people affected by an Asbestos Related Disease (ARD).
The ARD Support Group is open to people who have been diagnosed with an ARD, their carers, families and friends. The group provides a forum where people can meet and discuss issues that are pertinent to their circumstances. It offers friendship and understanding in an inclusive and safe environment.
The ARD Bereavement Support Group focuses on support for carers, families and friends. The group is about giving and receiving support, providing the opportunity to form long term friendships, sharing valuable knowledge and experience with the rest of the group.
Contact: Renee Webb
Telephone: (03) 9654 9555
Contact: 491-495 King Street, West Melbourne Victoria, 3003
Telephone: (03) 9326 7088
Fax: (03) 9326 7055
Leukodystrophies are a group of degenerative genetic diseases that affect the nervous system. They most often take hold during childhood with many losing the ability to see, hear, walk, sit up or even swallow. There is no cure for Leukodystrophy and the impact on families is devastating.
Contact: We are here 10am to 4pm Monday to Friday.
Nerve Centre Building
54 Railway Road
BLACKBURN VIC 3130 Australia
Toll Free Telephone: 1800 141 400
Telephone: (03) 9845 2831
Mobile: 0418 755 994
The Australian Pain Management Association is available to help all people living with pain in Australia.
“Pain is the biggest moral health issue in Australia today.” – Professor Michael Cousins, AM
Australian Pain Management Association Inc. (APMA)
GPO Box 2104, Brisbane 4001
Secretary: Ms Elizabeth Carrigan
Brainlink Services Ltd is a statewide service that is dedicated to improving the quality of life of people affected by conditions of the brain and providing support to their families.
Contact: Brainlink 54 Railway Road, Blackburn, Victoria 3130
Telephone: (03) 9845 2951
Fax: (03) 9845 2882
Breacan is a unique information and support service for Victorian women living with breast or gynaeocological cancers. As a service fo Women’s Health Victoria, Breacan presents an opportunity for women to connect and speak with trained peer support volunteers. The volunteers have all experienced cancer themselves or cared for someone who has. Breacan is a free statewide service that offers woman holistic support and information that works in tandem with their medical treatment and their existing support systems.
Contact: Kellie Holland
Ground floor, Queen Victoria Women’s Centre
210 Lonsdale Street Melbourne Victoria 3000
Telephone: 1300 781 580
Email: kellie.holland @breacan.org.au
Nationally the Association provides support for people with Cardiomyopathy, their families and friends. This is by regular social and informative meetings in several States, newsletters and a phonelink service.
Contact: Alistair Kerr PO BOX 273, Hurstbridge Victoria 3099
1300 362 787 – Heartline
1300 552 622 – CMAA Ltd.’s message bank for state contact details.
Carers Victoria is the statewide voice for family carers. Carers Victoria represents and provides support to carers in the community.
Contact: Kath Waugh Level 1, 37 Albert Street, Footscray Victoria 3011
Telephone: (03) 9396 9500
Fax: (03) 9396 9555
TTY: (text phone for hearing impaired) 03 9396 9587
The Children’s Tumour Foundation is the leading organisation in Australia providing support, advocacy and information and research for people living with the neurofibromatoses: MF1 and NF2 and Schwannomatosis.
Contact: Natalie McLean
Murdoch Children’s Research Institute
Royal Children’s Hospital
50 Flemington Road Parkville VIC 3052
Telephone: (03) 9936 6258
Coeliac Victoria and Tasmania is a not-for-profit organisation committed to providing support, information and understanding to people diagnosed with coeliac disease or medically requiring a gluten-free diet. We have been the peak body for people with coeliac disease in Victoria and Tasmania-providing a single.credible source of information since 1974. We are the voice for coeliac disease-we advocate on your behalf.collaborate with health professionals, gluten-free manufacturers and we support research.
Phone: 03 9808 5566 or (freecall) 1300 458 836
Facsimile: 03 9808 9922
The Continence Foundation of Australia (CFA) is the peak body for continence promotion, management and advocacy. The Continence Foundation of Australia manages the National Continence Helpline freecall 1800 33 00 66 on behalf of the Australian Government. The Helpline is a free service that provides confidential information and advice about bladder and bowel problems and continence products and services.
Contact: Rowan Cockerell
Chief Executive Officer
Continence Foundation of Australia
L1, 30-32 Sydney Road, Brunswick VIC 3056
Telephone: (03) 9347 2522
Facsimile: (03) 9380 1233
Contact: National Office: Level 1, 462 Burwood Road, Hawthorn Victoria, 3122
Telephone: (03) 9815 1266
Cystic Fibrosis Victoria offers a range of services for people living with CF, their families, friends and carers. Services include support (including financial assistance and equipment hire), advocacy and lobbying, information, education and fundraising.The Association has also has a Contact & Support Network which operates on a voluntary basis and provides support to people living with and affected by CF across the State.
Cystic Fibrosis (CF) is the most common life threatening genetic disorder in Australia. CF predominantly affects the lungs and digestive system. There is currently no cure, however with improved medication and treatment, life expectancy has been extended consideraby. Approximately 50% of people with CF now live until the age of 30 or beyond.
Contact: Office Manager 80 Dodds Street SOUTHBANK VIC 3006
Telephone: (03) 96861811
Freecall within Victoria: 1800 633 685
Fax: (03) 9686 3437
Contact: Susanne Baxandall, Advocacy & Information Officer
570 Elizabeth Street, Melbourne Victoria, 3000
Telephone: (03) 9667 1777
Fax: (03) 9667 1778
At Dianella we are working together with our community to celebrate our vision, and live our values.
We share a vision of Health, Wellbeing and Quality of life for ALL! In a community which is empowered, has opportunities, is caring and works together. We respect each other and our community We deliver excellent services We know that together we do best We foster professionalism amongst all staff We embrace a social model of health
Contact: Main campus -Broadmeadows 35 Johnstone St, Broadmeadows 3047
Telephone: Main Switchboard (03) 8345 5678
Medical (03) 8345 5777
Dental Emergency (03) 8311 4400
Contact: 587 Canterbury Rd Surrey Hills Victoria 3127
Telephone: 1300 852 853
Emerge Australia (formerly ME/CFS Australia)
Emerge Australia Inc (formerly ME/CFS Australia (VicTasNT) is a not-for-profit public benevolent institution dedicated to providing information, support and advocacy for people affected by Myalgic Encephalomyelitis (ME) more commonly known as Chronic Fatigue Syndrome (CFS) and their families, friends, carers; GPs and others health practitioners; educators and school staff; and the general community. Emerge’s vision is universal awareness and acknowledgement of ME/CFS as a medical condition. The mission of the organisation is to support and provide information for people associated with ME/CFS and to undertake advocacy.
Contact: Amanda Kelly
PO Box 120, Prahran Victoria 3181
Telephone: 03 9529 1344
GSNV is an umbrella organisation for people affected by any conditionwith a genetic component. GSNV offers education, information, support and advocacy as well as supporting condition-specific support groups. For more information and to find out how you can be involved visit our website.
Contact: Louisa di Pietro
10th floor, Royal Children’s Hospital Flemington Road, Parkville Victoria 3052
Telephone: (03) 8341 6315
The Goulburn Valley Primary Care Partnership (GVPCP) is a partnership of service providers across the Moira, Greater Shepparton and Strathbogie LGAs committed to strengthening the planning, coordination and delivery of primary care services through a range of collaborative strategies aimed at improving outcomes for the local communities.
Contact: Goulburn Valley Primary Care Partnership,
399 Wyndham Street Shepparton VIC 3630
Ph: (03) 58233 3285
Fax: (03) 5823 3299
Haemochromatosis Australia is the support, advocacy and health promotion group for people’s affected by haemochromatis (inherited iron overload disorder). we provide a range of educational resources including our website, print and electronic resources, public information sessions and the haemochromatosis informaiton line. We also focus on raising awareness in the community and among health professions to promote early diangosis and treatment.
Contact: Haemochromatosis Australia
PO Box 185, Wurtulla Queensland 4575
Phone: 07 54388267 or Mobile: 0435 375 450
HFV is committed to providing physical and emotional support and services for people affected by bleeding disorders, their families and carers in Victoria. The Foundation lobbies and advocates for quality services for members and provides education to the community about bleeding disorders.
Haemophilia is a blood clotting disorder in which one of the essential clotting factors is deficient. Haemophilia A, or Classical Haemophilia,is the most common form, and is due to the deficiency of Factor VIII. Haemophilia B, or Christmas Disease, is due to the deficiency of Factor IX. Von Willebrand’s disorder is another common blood clotting disorder.
Contact: Haemophilia Foundation Victoria,
13 Keith Street, Hampton East Victoria 3188
Ph: (03) 9555 7595
Fax: (03) 9555 7375
Health Issues Centre is at the forefront of promoting consumer perspectives in the Australian health system. It has gained a strong reputation around Australia for its public interest research and its analysis of the health system, particularly promoting awareness of consumer perspectives and needs.
Contact: Health Issues Centre Inc. Level 8, 255 Bourke St
Melbourne VIC 3000
Ph: (03) 9664 9343
Fax (03) 9663 7955
The Heart Foundation saves livesand improves health through funding world-class cardiovascular research, guidelines for health professionals, informing the public through media and public health campaigns and assisting people with cardiovascular disease.
Contact: Kellie-Ann Jolly
Level 12, 500 Collins Street Melbourne Victoria 3000
Telephone: (03) 93298511
Fax: (03) 9321 1574
Hepatitis Victoria is a statewide organisation representing and catering to the needs of people with viral hepatitis, their carers, partners, family and friends.
Hepatitis Victoria works to achieve this through support, advocacy, education and consultation.
Our Vision That viral hepatitis is recognised as a health and social issue requiring understanding and appropriate resources That stigmatisation of and discrimination against people with viral hepatitis no longer occurs That people affected by viral hepatitis receive appropriate and accessible services, support, health and social care in order to maximise their quality of life That there are no new viral hepatitis infections
Contact: Hepatitis Victoria Suite 5, 200 Sydney Road, Brunswick Victoria, 3056
Hepatitis Infoline: 1800 703 003
Telephone: (03) 9380 4644
Fax: (03) 9380 4688
The Inner East Primary Care Partnership is a partnership of service providers committed to strengthening the planning, coordination and delivery of primary care services by using a range of innovative and collaborative strategies designed to improve outcomes for people using health and support services.
The Australian Kidney Foundation now trading as Kidney Health Australia was founded in 1968. As a non profit organisation, our vision is Australia free of kidney and urinary tract disease. Our mission is to be the lead organisation promoting kidney and urinary tract health through research, advocacy, education and health service excellence.
Kidney Health Australia provides support and education services to patients and their families with kidney disease throughout Australia.
Contact: Health Services Manager
344 St. Kilda Road, Melbourne, Victoria, 3004
Telephone: (03) 9674 4300
Fax: (03) 9686 7289
Knox Community Health Service was established in 1996 to provide a high quality of community care and health education programs to Knox consumers. Knox Community Health Service delivers a range of services that improve the physical, mental and social well-being of individuals, families and communities in the City of Knox.
Contact: Belinda Lehane, PA to CEO
1063 Burwood Highway, Ferntree Gully, Victoria 3156
Telephone: (03) 9757 6200
Fax: (03) 9756 0144
The Leukaemia Foundation is the only national non-profit organisation dedicated to the care and cure of patients and families living with leukaemias, lymphomas, myeloma and related blood disorders. Since its formation in Queensland in 1975, the Foundation has been committed to improving survival for patients and providing much needed support. The Foundation provides a range of free services and programs including practical assistance, emotional support, information, education and peer support programs. The Foundation funds leading research into better treatment and cures through its national research program as well as supporting national facilities like the PwC Leukaemia and Lymphoma Tissue Bank and the Leukaemia Foundation Research Unit at the QIMR.
The Foundation’s vision is to create a world free of blood cancers and its mission is to care for patients and their families.
Contact: Support Services Manager
The Leukaemia Foundation
Freecall 1800 620 420
LifeCircle’s purpose is to profoundly change the experience of dyaing and death for all Australians. Our vision is for people in Australia to live well right to the end of life. LifeCircle builds community capacity by helping carers to access personal networks, health care and local community services through its mentoring program. The organisation also provides educational seminars that aim to empower people to make informed decisons.
LifeCircle builds community capacity by helping carers to access personal networks, health care and local community services through its mentoring program. The organisation also provides educational seminars that aim to empower people to make informed decisions about advance care planning and the legal and financial issues that arise in later life. LifeCircle’s work helps people to see death as a natural part of life and strengthens carer resilience and community capacity to care.
LifeCircle Australia has a long history of working in the community. Formed from the merger of two organisations, Home Hospice and Life Goes On, LifeCircle Australia came into being on 1 July 2011.
Contacr: LifeCircle Australia Ltd
153 Dowling Street
Woolloomooloo NSW 2011
Our Mission To empower amputees with information and support.
Objectives To achieve our mission and vision, Limbs 4 Life is pursuing the following objectives:
Information • Develop and distribute information resources to support individuals affected by amputation • Develop and distribute information resources to support amputee-related medical and allied health care professionals • Raise awareness of amputees and related issues within the community
Support • Deliver peer support to amputees through access to a network of trained Peer Support Volunteers • Provide on-going support to amputees through the provision of education, social or sporting programs.
Advocacy • Foster positive links and partnerships with government agencies, medical and allied health professionals and community organisations to promote the welfare, concerns and needs of amputees
Costact: PO Box 282 East Doncaster VIC 3109
Phone: 1300 782 231 (freecall)
Monashlink Community Health Service
Monashlink is an innovative and respected community health service that provides services to residents in the City of Monash from four main sites in Glen Waverley, Ashburton, Hughesdale and Clayton. It delivers a range of services and programs including the Early Intervention in Chronic Disease program.
Contact: Monashlink Telephone: 1300 552 509
MS Australia, the national peak body for Australians living with MS, provides leadership in advocacy, communications, brand and collaborative relationships to benefit Australians living with MS, improve treatments and accelerate research to ultimately find a cure for MS.
Contact: MS Australia ACT/NSW/VIC
54 Railway Road, Blackburn Victoria, 3130
For all enquiries please make contact with MS Connect on 1800 042 138 (business hours) or email firstname.lastname@example.org
Ovarian Cancer Australia is a national not-for-profit organisation providing support and advocacy for people affected by ovarian cancer, and is the peak body for ovarian cancer awareness and prevention. Our programs are focused in these important areas:
Promoting awareness of ovarian cancer and its symptoms in the community;
Giving Australian women and their healthcare providers a better understanding of the early signs of ovarian cancer;
Providing support networks and resources to women and their families and friends affected by ovarian cancer;
Advocating with medical professionals, government and the media for women diagnosed with ovarian cancer.
Queen Victoria Women’s Centre
Level 2, 210 Lonsdale Street Melbourne Victoria 3000
Telephone: 1300 660 334
Palliative Care Victoria
Lvl 2 / 182 Victoria Parade
East Melbourne, Vic 3002
Palliative care is specialist care for people living with an advanced or life-threatening illness and their families.
It includes controlling pain, making them comfortable, and responding to their physical, psychological, social, cultural, spiritual and emotional needs.
A primary goal of palliative care is to improve quality of life and to provide support to the family.
It is delivered in a way that respects the person’s wishes and needs, helps them to understand the dying process and to receive the support they need, including coping with loss and grief.
Palliative care is much more than care during the last days or weeks of a person’s life and is not a service of “last resort”. It is based on needs and can commence once it becomes apparent that a cure is not possible. Although a cure is not possible, active treatment may continue to manage the symptoms and course of the disease.
Palliative care is helpful for people with a wide range of life-threatening illnesses including cancer, end-stage heart, lung and kidney diseases, motor-neurone disease and dementia.
Palliative care can be provided in a range of settings – at home, in hospital, in a residential care service, and in a hospice.
Phone: 03 9662 9644
Parkinson’s Victoria is a statewide, not-for-profit organisation supporting people with Parkinson’s. We provide a range of information and support services to those diagnosed with the condition, as well as their families, carers, the general community and health care professionals.
Address: 587 Canterbury Road Surrey Hills Victoria 3124
Telephone: (03) 8809 0400
The Pelvic Instability Association a not-for-profit peer support association based in Victoria. It provides information and support to women, families and health care providers affected by pregnancy related pelvic girdle pain (previously known as pelvic instability. This association offers website, support meetings and one to one support via phone, email and social networking.
Contact: President Jessica Danko
Telephone: (03) 9539 3217 (message bank)
Frankston Community Health Service (FCHS) is located in the Frankston Integrated Health Centre (FIHC). Frankston Flinders Road (Hastings Road) Frankston Services and programs are provided from a range of sites and settings across Frankston and the Mornington Peninsula. Community-based services are offered to children, youth and adults across the area. They include health promotion and chronic disease self-management programs.
PO Box 52, Frankston Victoria 3199
Telephone: (03) 9784 8100
Fax: (03) 9784 8149
Information, advice, advocacy, support and representation for all people living with HIV/AIDS in Victoria.
Contact: Sonny Williams
Suite1, 111 Coventry St. Southbank Victoria 3006
Telephone: (03) 9863 8733
Fax: (03) 9863 8734
Polio Australia is the peak national body representing Australia’s polio survivors. Polio Australia is committed to standardising quality polio information and service provision across Australia for polio survivors. Our vision is that all polio survivors in Australia have access to appropriate health care and the support required to maintain independence and make informed lifestyle choices.
Contact: Mary-ann Leithof
Title: National Program Manager Suite 119C, Level 1/89 High Street Kew Vic 3101
Postal Address: PO Box 500, Kew East VIC 3102
Telephone: (03) 9016 7678
Mobile: 0466 718 222
An organisation supporting women living with HIV/AIDS.
Contact: Stephanie Moore – Director
Telephone: (03) 92766918
Post Polio Victoria represents people with post polio health issues, promoting their needs to health services and decision makers. It advocates for increased awareness of post polio health issues and access to adequate post polio aware services. It aims for all people with health issues related to post polio to have the services, equipment and information to fully participate in the community.
Contact: Liz Telford
Ross House, 247-251 Flinders Lane, Melbourne VIC 3000
Telephone: 0431 702 137
Prostate Cancer Foundation of Australia is the peak organisation for prostate cancer. Our mission is to reduce the impact of prostate cancer on Australian men, their partners and families. we do this by raising awareness and education in the community, funding quality research and supporting men through the 84 local community PCFA support groups.
Contact: A. Giles, CEO
Telephone: (02) 9438 7000
Contact: Fiona Hearn 31 Alma Road, St. Kilda Victoria, 3182
Telephone: (03) 9536 5222
Fax: (03) 9536 5333
Scleroderma Australia exists to support those suffering from scleroderma, as well as their carers, familiy and friends.
Scleroderma Victoria is run by volunteers to support Victorians with scleroderma, promote awareness of the condition and encourage research. There are 320 members as at 30 June 2008.
Contact: Gene Swinstead, President
St Vincent’s Hospital
41 Victoria Street, Fitzroy Victoria 3065
Telephone: (03) 9288 3651
Stroke Association of Victoria
Stroke Association of Victoria Inc (SAV) is a volunteer organisation assisting stroke survivors and their families throughout Victoria.
It is a network of people whose lives have been changed by a stroke, either to themselves or to someone for whom thy are a carer. These people now give their time supporting carers and stroke survivors and spreading the message of stroke awareness to the community at large.
Contact: 03 9670 1117 (8 am to 7 pm) or 1300 434 233 (regional callers).
PO Box 88
Flinders Lane Victoria 8009
Stroke Foundation (The National Stroke Foundation)
The National Stroke Foundation is a not-for-profit organisation that works with the public, government, health professionals, patients, carers and stroke survivors to reduce the impact of stroke on the Australian community. We are dedicated to raising awareness, preventing stroke, facilitating research, improving treatment and making life better for stroke survivors.
Contact: Jo Smith, Project Officer
Level 7, 461 Bourke Street, Melbourne Victoria 3000
Telephone: (03) 9670 1000
Fax: (03) 9670 9300 StrokeLine – 1800 787 653
Contact: Sandra van Lith
333 Waverley Road, Mount Waverley Victoria, 3149
Telephone: (03) 9888 2211
Fax: (03) 9888 2150
The Type 1 Diabetes Network is a consumer group run for and by people with type 1 (autoimmune) diabetes. Activities include online communities for young adults: www.realitycheck.org.au and parents www.MuntedPancreas.com. There are also educational resources, notices of networking events and research into the experiences and the health services use by people with type 1 diabetes.
Contact: Colleen Clarke
Telephone: 0414 281 539
VACCHO represents all Aboriginal community controlled health organisations in Victoria and is a key partner in the Aboriginal Health Promotion and Chronic Care (AHPACC) strategy.
Contact: VACCHO 5-7 Smith Street, Fitzroy, Victoria, 3065
Telephone: (03) 9419 3350
Fax: (03) 9417 3871
As a community based health promoting organisation, The Victorian AIDS Council aims to: Empower individuals and communities to manage their own health and wellbeing. Be responsive to the changing needs of our communities. Build supportive environments for individuals to adopt and sustain healthy behaviours. Strengthen the capacity of the broader community, including government and service providers to respond to the needs of our communities.
We are committed to social justice and social change. We respect and celebrate diversity and will work to provide an enabling environment where people are able to express their individuality. Since our beginning, we have been a strategic partner of government, hospitals and other service providers. We are inspired and made more effective by the hard work and dedication of our volunteers and by the ongoing support of the communities we serve.
The strength of our service lies in the participation of our communities. They help us develop and deliver services in partnership with government, health professionals and research organisations.
Contact: Simon Ruth 6 Claremont Street, South Yarra Victoria, 3141
Telephone: (03) 9865 6700
Suite 4, 424-426 Nepean Highway
Frankston Victoria 3199
Contact: Micky Sinopoli
Telephone 1300 368 or (03) 9783 9233
Facsimile: (03) 9783 9208