Patient support organisations
This information was correct at the time of publication in Australian Prescriber but some of it may be out of date now. Please contact the organisation itself for up-to-date information.
Alzheimer's Australia
Alzheimer's Australia provides a range of sensitive and flexible services to support people with any type of dementia, their families and carers throughout the illness. These services include information about dementia, a 24-hour Dementia Helpline, an Interpreter Service, support groups for people who have been diagnosed with dementia, private and confidential counselling, and other local programs. Services differ slightly between the state organisations. The website of Alzheimer's Australia contains useful 'Help sheets for family and carers' on such topics as communication, driving, going to hospital, wandering, pain, safety issues, etc.
Contact information
| 24-hour Dementia Helpline | 1800 639 331 |
| Website | www.alzheimers.org.au |
| Interpreter Service | 131 450 |
Australian Capital Territory
Alzheimer's Australia ACT
Frewin Place SCULLIN ACT 2614
Phone: (02) 6254 5544
Fax: (02) 6254 2522
Email:admin@alzheimersact.asn.au
New South Wales
Alzheimer's Australia NSW
Macquarie Hospital Campus
Cox's Road Entrance
NORTH RYDE NSW 2113
Phone: (02) 9805 0100
Fax: (02) 9805 1665
Email:admin@alznsw.asn.au
NorthernTerritory
Alzheimer's Australia NT Inc.
Darwin
Nightcliff Community Centre
Suite 3/18 Bauhinia Street
NIGHTCLIFF NT 0814
Phone: (08) 8948 5228
Fax: (08) 8948 5229
Email:admin@alzheimersnt.org.au
Alice Springs
Shop 5 Cinema Complex Breezeway
Todd Mall
ALICE SPRINGS NT 0870
Phone: (08) 8952 9799
Fax: (08) 8952 9796
Queensland
Alzheimer's Australia (Queensland) Inc.
90 Allied Drive
ARUNDEL QLD 4214
Phone: (07) 5574 6224
Fax: (07) 5571 5987
Email:info@alzqld.asn.au
Regional offices: Darling Downs and South West, Gold Coast, North Queensland, Sunshine Coast (Dementia), Central Queensland
South Australia
Alzheimer's Australia SA Inc.
27 Conyngham Street
GLENSIDE SA 5065
Phone: (08) 8372 2100
Fax: (08) 8338 3390
Email:alzsa@alzheimerssa.asn.au
Tasmania
Dementia and Alzheimer's Association (Tasmania) Inc.
The Old Vicarage
St John's Avenue
NEW TOWN TAS 7008
Phone: (03) 6278 9897
Fax: (03) 6278 9878
Email:debbie.slater@alztas.asn.au
Victoria
Alzheimer's Australia Vic.
98-104 Riversdale Road
HAWTHORN VIC 3122
Phone: (03) 9815 7800
Fax: (03) 9815 7801
Email:alz@alzvic.asn.au
Western Australia
Alzheimer's Australia WA
Mary Chester Centre
9 Bedbrook Place
SHENTON PARK WA 6008
Phone: (08) 9388 2800
Fax: (08) 9388 2739
Email:alzwa@alzheimers.asn.au
Website: www.alzheimers.asn.au
Regional offices:York, Albany, Kalgoorlie, Mandurah, Rockingham, Bunbury
see article Newborn Hearing screening
Deafness Forum
Deafness Forum represents the interests and viewpoints of the deaf and hearing impaired communities of Australia (including those people who have a chronic disorder of the ear and those who are deaf and blind). The Deafness Forum provides information on supporting organisations in local areas, and a range of links on its web site.
Contact
218 Northbourne Avenue
BRADDON ACT 2612
Phone: (02) 6262 7808
TTY: (02) 6262 7809
E-mail:info@deafnessforum.org.au
Web site:www.deafnessforum.org.au
Australian Hearing
Australian Hearing provides government subsidised hearing care for children and young adults to the age of 21, and pension concession card holders. Subsidised services include hearing assessment, fitting of hearing aids and hearing rehabilitation.
Australian Hearing has over 70 permanent centres. Australian Hearing audiologists also periodically visit community centres, medical centres, local hospitals and other locations. The research arm of Australian Hearing is the National Acoustic Laboratories.
Contact
Phone: 13 17 97
Web site:www.hearing.com.au
Diabetes Australia consists of twelve organisations:
- the eight State and Territory Associations of Diabetes Australia
- Australian Diabetes Society
- Australian Diabetes Educators Association
- Kellion Diabetes Foundation
- Diabetes Research Foundation - Western Australia.
All funds raised by or on behalf of Diabetes Australia are re-invested into research, health services, provision of self-management products and services, and public awareness.
Contacts
National office
1st Floor, Open Systems House
218 Northbourne Avenue
BRADDON ACT 2612
Tel: 1800 640 862 (toll-free); (02) 6230 1155
Fax: (02) 6230 1535
E-mail: admin@diabetesaustralia.com.au
Web site: www.diabetesaustralia.com.au
Australian Capital Territory
The Grant Cameron Community Centre
Mulley Street
HOLDER ACT 2611
Tel: (02) 6288 9830
Fax: (02) 6288 9874
E-mail: diab.act@diabetesaustralia.com.au
New South Wales
GPO Box 9824
SYDNEY NSW 2001
Tel/Fax: 1300 136 588 (toll-free)
E-mail: marketing@diabetesnsw.com.au
Northern Territory
2 Tiwi Place
TIWI NT 0810
Tel: (08) 8927 8488; (08) 8927 8482
Fax: (08) 8927 8515
E-mail: ceo@diabetesnt.org.au
Queensland
Cnr Ernest and Merivale Streets
SOUTH BRISBANE QLD 4101
Tel: (07) 3239 5666
Fax: (07) 3846 4642
E-mail: daqld@daq.org.au
South Australia
159 Sir Donald Bradman Drive
HILTON SA 5033
Tel: (08) 8234 1977
Fax: (08) 8234 2013 E-mail: dasa@da-sa.com.au
Tasmania
57E Brisbane Street
HOBART TAS 7000
Tel: (03) 6234 5223
Fax: (03) 6234 5828
E-mail: lclark@datas.org.au
Victoria
7th Floor, 100 Collins Street
MELBOURNE VIC 3000
Tel: (03) 9654 8777
Fax: (03) 9650 1917
E-mail: mail@dav.org.au
Western Australia
48 Wickam Street
EAST PERTH WA 6004
Fax: (08) 9221 1183
E-mail: dawaproducts@dawa.asn.au
October is National Lupus Awareness Month. The lupus groups of Australia strive to assist people with lupus by providing beneficial information, support and counselling. These compassionate and service oriented groups seek to meet the challenge that lupus presents to the lupus patient, their family and doctor.
Contacts
New South Wales
Lupus Association of NSW Inc.
PO Box 89
North Ryde 2113
Tel. (02) 878 6055
Victoria
Victorian Lupus Association Inc.
GPO Box 811F
Melbourne 3001
Tel. (03) 650 5348
Western Australia
Lupus Group of Western Australia Inc.
c/- 2 Stone Road
Lesmurdie 6076
Tel. (09) 291 8850
Queensland
Lupus Support Group
c/- 42 Jainba Street
Indooroopilly 4068
Tel. (07) 878 2137
Tasmania
Lupus Association of Tasmania Inc.
PO Box 639
Launceston 7250
Tel. (003) 301 313
Web
www.lupustas.org
Email
South Australia
Lupus/Scleroderma Group
Arthritis Foundation of SA
99 Anzac Highway
Ashford 5035
Tel. (08) 297 2488
National Association of People living With HIV/AIDS (NAPWA)
The National Association of People living With HIV/AIDS (NAPWA) is Australia's peak non-government advocacy organisation representing people living with HIV/AIDS community-based groups from each of Australia's states and territories.
Contacts
National Association of People living With HIV/AIDS (NAPWA)
Level 1, 222 King Street
Newtown NSW 2042
Phone: (02) 9557 8825
Web site: www.napwa.org.au
E-mail: admin@napwa.org.au
State and Territory AIDS Councils
AIDS Council of NSW
9 Commonwealth Street
Surry Hills NSW 1300
Phone: (02) 9206 2000
Web site: www.acon.org.au
Northern Territory AIDS Council
46 Woods Street
Darwin NT 0800
Phone: (08) 8941 1711
Web site: www.octa4.net.au/ntac
AIDS Action Council of the ACT
16 Gordon Street
Acton ACT 2601
Phone: (02) 6257 2855
Web site: www.aidsaction.org.au
West Australian AIDS Council
664 Murray Street
West Perth WA 6872
Phone: (08) 9482 0000
Web site: www.waaids.com
AIDS Council of South Australia
64 Fullarton Rd
Norwood SA 5067
Phone: (08) 8362 1611
Web site: www.aidscouncil.org.au
Victorian AIDS Council
6 Claremont Street
South Yarra VIC 3141
Phone: (03) 9865 6700
Web site: www.vicaids.asn.au
Tasmanian Council on AIDS and Related Diseases
319 Liverpool St
Hobart TAS 7000
Phone: (03) 6234 1242
Web site: www.tascahrd.org.au
Queensland AIDS Council (QuAC)
32 Peel Street
South Brisbane QLD 4101
Phone: (07) 3017 1777
Web site: www.quac.org.au
Alzheimer's Australia is the national peak body for people with dementia, their families and carers. It works to raise public awareness and understanding of dementia in the wider community.
The Alzheimer's Australia website has a detailed list of help sheets and other resources that can be printed. There are state associations in all eight states and territories, that provide information, support, advocacy and education services. For details of these state associations, see the website. The national dementia helpline is a confidential 24-hour telephone information and support service available across Australia.
Website www.alzheimers.org.au
National dementia helpline 1800 100 500
Interpreter service 131 450
The Alzheimer's Associations exist to improve the quality of life of people with dementia and their carers by providing information, support, counselling and education. Alzheimer's Associations are self help, nonprofit organisations which operate in all States and Territories. A national secretariat is based in Canberra. A national newsletter, 'Dementia Today', is published regularly throughout the year.
Contacts
National Office
Alzheimer's Association(Australia)
PO Box 191 Deakin West ACT 2600
Tel:(06) 285 3648 Fax:(06) 285 3711
New South Wales
Alzheimer's Association NSW
PO Box 42 North Ryde 2113
Tel:(02) 805 0100 Fax:(02) 805 1665
Victoria
Alzheimer's Association VIC
PO Box 5096 Glenferrie South 3122
Tel:(03) 818 3022 Fax:(03) 818 3940
Queensland
Alzheimer's Association QLD
PO Box 446 Lutwyche 4030
Tel:(07) 857 4043 Fax:(07) 857 3693
South Australia
Alzheimer's Association SA
PO Box 202 Eastwood 5063
Tel:(08) 373 2670 Fax:(08) 373 3675
Western Australia
Alzheimer's Association WA
PO Box 1099 Subiaco 6008
Tel:(09) 388 2800 Fax:(09) 388 2739
Tasmania
Alzheimer's Association TAS
PO Box 1606 Hobart 7001
Tel:(002) 34 8884 Fax:(002) 36 9012
Northern Territory
Alzheimer's Association NT
PO Box 515 Nightcliff 0814
Tel:(089) 41 3963 Fax:(089) 27 2238
Australian Capital Territory
Alzheimer's Association ACT
PO Box 662 Canberra City 2601
Tel:(02) 6255 0722. Fax:(06) 247 1181
National toll-free phone no. 1800 639 331
Anaphylaxis Australia supports and helps people affected by anaphylaxis and food allergies to manage their everyday lives while minimising the risk to their health and wellbeing. As a charitable non-profit organisation, it aims to raise public awareness and provides advocacy and education, for example through parents, schools and workplaces.
Anaphylaxis Australia has information on its website and offers support in all states. It has many educational resources for sale including DVDs, books, action plans, and medication and training accessories. There are also information packs for health professionals. Doctors can order free brochures for their patients.
| Mailing address | PO Box 3182 Asquith NSW 2077 |
| Web | www.allergyfacts.org.au |
| Phone | 1300 728 000 (02) 9482 5988 for administration and orders only |
| Fax | (02) 9482 4113 |
The Arthritis Foundation of Australia, which began as the Australian Rheumatism Council, is an advocacy, research and fundraising body. It aims to improve the quality of life of people who have arthritis or a related condition, those who care for them, and people at risk of developing arthritis, by reducing and preventing the effects of musculoskeletal disorders.
Arthritis Foundations in every State and Territory provide group meetings, a range of activities and talks, and self-management programs for both arthritis and osteoporosis. In these programs people learn about medications and develop strategies to manage their condition such as balancing exercise and rest, managing stress, and undertaking physical treatments such as hydrotherapy and physiotherapy.
The Arthritis Foundation produces fact sheets on forms of arthritis and treatments, endorsed where appropriate by the Australian Rheumatology Association. The Foundation seeks cures, preventions and better treatments by supporting scientific and medical research into arthritis.
Contacts
National office
Arthritis Foundation of Australia
GPO Box 121
SYDNEY NSW 2001
Phone: (02) 9552 6085; 1800 011 041 free call
Fax: (02) 9552 6078
Web site: www.arthritisfoundation.com.au
Arthritis ACT
PO Box 4017
WESTON ACT 2611
Phone: (02) 6288 4244
E-mail: afact@austarmetro.com.au
Arthritis NSW
Locked Bag 16, Post Office
NORTH PARRAMATTA NSW 2151
Phone: (02) 9683 1622
E-mail: info@arthritisnsw.org.au
Arthritis NT
6 Caryota Court
COCONUT GROVE NT 0810
Phone: (08) 8948 5232
E-mail: afnt@telstra.com
Arthritis QLD
PO Box 2121
WINDSOR QLD 4030
Phone: (07) 3857 4200; 1800 011 041 free call
E-mail: info@arthritis.org.au
Arthritis SA
118 Richmond Road
MARLESTON SA 5033
Phone: (08) 8379 5711
E-mail: info@arthritissa.org.au
Arthritis TAS
Box 30 McDougall Building
Ellerslie Road
BATTERY POINT TAS 7004
Phone: (03) 6224 4755; 1300 650 647 infoline
E-mail: hobart@arthritistasmania.com.au
Arthritis VIC
263-265 Kooyong Rd
ELSTERNWICK VIC 3185
Phone: (03) 8531 8000; 1800 011 141 free call
E-mail: afv@arthritisvic.org.au
Arthritis WA
PO Box 34
WEMBLEY WA 6014
Phone: (08) 9388 2199
E-mail: general@arthritiswa.org.au
Asthma Australia is an association of all the Asthma Foundations throughout Australia. Asthma Australia aims to eliminate asthma as a major cause of ill health and disruption within the community. The Asthma Foundations provide asthma education, information, research, community advocacy and support to people with asthma and their carers.
Contacts
National office
Level 3, 63 Stead Street
SOUTH MELBOURNE VIC 3205
Phone: (03) 9696 7861; Free call 1800 645 130
Fax: (03) 9696 7397
E-mail: national@asthmaaustralia.org.au
Web site: www.asthmaaustralia.org.au
Asthma New South Wales
Unit 1/82-86 Pacific Highway
ST LEONARDS NSW 2065
Phone: (02) 9906 3233
Fax: (02) 9906 4493
E-mail: ask@asthmansw.org.au
Web site: www.asthmansw.org.au
Asthma Northern Territory
PO Box 40456
CASUARINA NT 0811
Phone: (08) 8922 8817
Fax: (08) 8922 8616
E-mail: asthmant@mpx.com.au
Asthma Queensland
51 Ballow Street
FORTITUDE VALLEY QLD 4006
Phone: (07) 3252 7677
Fax: (07) 3257 1080
E-mail: admin@asthmaqld.org.au
Web site: www.asthmaqld.org.au
Asthma Foundation of South Australia
300 South Rd HILTON SA 5033
PO Box 2035 HILTON SA 5033
Phone: (08) 8362 6272
Fax: (08) 8362 2818
E-mail: info@asthmasa.org.au
Web sites:
www.asthmasa.org.au
www.asthmafriendlyschools.org.au
www.breathebetter.com.au
Asthma Tasmania
Mailbox 5 McDougall Building
Ellerslie Road
BATTERY POINT TAS 7004
Phone: (03) 6223 7725
Fax: (03) 6224 2509
E-mail: asthmatas@bigpond.com
Web site: www.asthmatas.org.au
The Asthma Foundation of Victoria
491-495 King Street
WEST MELBOURNE VIC 3003
Phone: (03) 9326 7088
Fax: (03) 9326 7055
Toll Free 1800 645 130
E-mail: afv@asthma.org.au
Web site: www.asthma.org.au
Asthma Western Australia
36 Ord Street
WEST PERTH WA 6005
Phone: (08) 9481 1234
Fax: (08) 9481 1292
E-mail: ask@asthmawa.org.au
Web site: www.asthmawa.org.au
The states and territories have independent Hepatitis Councils which provide information, support, referral and counselling about hepatitis C. The Australian Hepatitis Council website contains many resources, fact sheets and links.
Website: www.hepatitisaustralia.com
The Australian Kidney Foundation is a non-profit organisation that relies on community funding and support, with minimal government funding. Through its branches the Foundation aims to increase public awareness and understanding of kidney-related diseases, and to fund research to understand better the causes and treatment of kidney and urinary tract diseases.
The Foundation conducts broad-based education programs for patients, potential organ donors, medical practitioners, the general community and school students. It aims to improve patient services and preventative medicine, by informing government of patients' needs and commenting on relevant public issues, as well as raising funds. The Foundation encourages and promotes organ donation, and makes available information on kidney-related conditions.
`Kidney Care', a recent initiative, is a support network and monthly education session for people living with kidney disease. Volunteers support people living with kidney disease through:
– public speaking about kidney disease, organ donation and transplantation
– a telephone support register
– practical support to people on dialysis, their families and friends.
Contacts
The Australian Kidney Foundation
GPO Box 9993 in each capital city
Web site: www.kidney.org.au
Kidney Health Information Line: Free call 1800 682 531
National Office and South Australia Office
82 Melbourne Street
NORTH ADELAIDE SA 5006
Tel: 08 8267 4555 Fax: 08 8267 4450
Email: akf@adelaide.kidney.org.au
New South Wales
Ground Floor, 161 Clarence Street
SYDNEY NSW 2000
Tel: 02 9299 4599 Fax: 02 9299 7582
Email: akf@sydney.kidney.org.au
Victoria
6th Floor, 11 Queens Road
MELBOURNE VIC 3004
Tel: 03 9866 3300 Fax: 03 9866 6344
Email: akf@melbourne.kidney.org.au
Queensland - Brisbane
Level 4, Oxford Centre
133 Leichhardt Street
SPRING HILL QLD 4000
Tel: 07 3832 2520 Fax: 07 3832 3453
Email: akf@brisbane.kidney.org.au
North Queensland - Townsville
Unit 2, 1 Smith Street
HYDE PARK QLD 4812
Tel: 07 4721 3322 Fax: 07 4721 3326
Email: kidney@ultra.net.au
North Queensland - Rockhampton
PO Box 417
ROCKHAMPTON MC QLD 4702
Tel: 019 630 473
Western Australia
3rd Floor, 68 St. George's Terrace
PERTH WA 6000
Tel: 08 9322 1354 Fax: 08 9481 3707
Email: akf@perth.kidney.org.au
Tasmania
295A Macquarie Street
HOBART TAS 7000
Tel: 03 6224 4869 Fax: 03 6224 4871
Email:akf@hobart.kidney.org.au
Northern Territory
Room 4, Casuarina Plaza
CASUARINA NT 0810
Tel: 08 8945 4047 Fax: 08 8945 4037
National Renal Resource Centre
Sydney Dialysis Centre
37 Darling Point Road
DARLING POINT NSW 2027
Tel: 02 9362 3995; 02 9362 3121
Free call: 1800 257 189
Fax: 02 9362 4354
Email: d.oshaughnessy@hcn.net.au
See also: Myasthenia gravis - a patient's perspective
See also: Treatment of myasthenia gravis
The Australian Myasthenic Association in NSW was set up to support sufferers of myasthenia gravis and their carers. It has members from all over Australia and overseas.
The website contains useful information about myasthenia gravis, its causes, symptoms, diagnosis, treatments and history. There are links to a range of patient support resources such as newsletters, chat facilities, events, patient experiences and practical lifestyle advice. A membership fee entitles members to receive the association's newsletters and goes towards funding events and other costs.
Website: www.myasthenia.org.au
Email: info [at] myasthenia.org.au
Phone: (02) 4283 2815
Address: 108 Bantry Bay Road Frenchs Forest NSW 2086
[added March 2008]
Myasthenia Gravis Friends and Support Group WA
Website: www.myastheniawa.info
Phone: (08) 9459 7168
Email: contact[at] myastheniawa.info
Myasthenia Gravis Association of Queensland
Website: www.mg-qld.gil.com.au
Phone: Free call 1800 802 568
Diabetes Australia is a federation of twelve organisations - the eight State and Territory Associations of Diabetes Australia, the Australian Diabetes Society, the Australian Diabetes Educators Association, the Kellion Diabetes Foundation and The Diabetes Research Foundation - Western Australia.
The State and Territory associations (see below) and their shop fronts provide ongoing support as well as products, services, information and education for people with diabetes and their families.
Contacts
National office
Diabetes Australia
GPO Box 3156 CANBERRA ACT 2601
Phone: 1300 136 588 (local call cost)
Fax: (02) 6330 1535
E-mail: admin@diabetesaustralia.com.au
Web site: www.diabetesaustralia.com.au
Australian Capital Territory
Grant Cameron Community Centre
27 Mulley Street HOLDER ACT 2611
PO Box 3727 WESTON ACT 2611
Phone: (02) 6288 9830
Fax: (02) 6288 9874
E-mail: diab.act@diabetes-act.com.au
Web site: www.diabetes-act.com.au
New South Wales
26 Arundel Street GLEBE NSW 2037
GPO Box 9824 SYDNEY NSW 2001
Phone: (02) 9552 9900; 1300 136 588 (local call cost)
Fax: (02) 9660 3633
E-mail: info@diabetesnsw.com.au
Web site: www.diabetesnsw.com.au
Queensland
Cnr Merivale & Ernest Streets
SOUTH BRISBANE QLD 4101
GPO Box 9824 BRISBANE QLD 4001
Phone: 1300 136 588 (local call cost)
E-mail: info@daq.org.au
Web site: www.daq.org.au
Northern Territory
Shop 2 Tiwi Place TIWI NT 0810
PO Box 40113 CASUARINA NT 0811
Phone: (08) 8927 8488
Fax: (08) 8927 8515
E-mail: info@diabetesnt.org.au
Western Australia
48 Wickham Street EAST PERTH WA 6004
PO Box 6097 EAST PERTH WA 6892
Phone: (08) 9325 7699
Fax: (08) 9221 1183
E-mail: info@dawa.asn.au
South Australia
159 Sir Donald Bradman Drive
HILTON SA 5033
GPO Box 1930 ADELAIDE SA 5001
Phone: (08) 8234 1977
Fax: (08) 8234 2013
E-mail: diabetessa@diabetessa.com.au
Web site: www.diabetessa.com.au
Victoria
570 Elizabeth Street MELBOURNE VIC 3000
PO Box 206D MELBOURNE VIC 3001
Phone: (03) 9667 1777
Fax: (03) 9667 1778
E-mail: mail@dav.org.au
Web site: www.dav.org.au
Tasmania
88 Bathurst Street HOBART TAS 7000
GPO Box 827 HOBART TAS 7001
Phone: (03) 6234 5223
Fax: (03) 6234 5828
E-mail: mail@datas.org.au
Web site: www.datas.org.au
Queensland
Eating Disorders Association of Queensland
PO Box 138
Wilston 4051
Tel: 07 3352 6900
Fax: 07 3352 7700
New South Wales
Eating Disorders Association of NSW
PO Box 811
Castle Hill 1765
Tel: 02 9899 5344
Fax: 02 9899 5811
Australian Capital Territory
Women's Health Matters Information Line
Tel: 02 8286 2043
Victoria
Anorexia and Bulimia Nervosa Foundation of Victoria
1513 High Street
Glen Iris 3146
Tel: 03 9885 0318
Fax: 03 9885 1153
Tasmania
Anorexia and Bulimia Support Group
2/9A Coolabah Road
Lower Sandy Bay 7005
Tel: 03 6225 0131
South Australia
Anorexia and Bulimia Nervosa Association
Woodards House
1st Floor
47-49 Waymouth Street
Adelaide 5000
Tel: 08 8212 1644
Fax: 08 8212 7991
Northern Territory
Amity Community Services
GPO Box 3628
Darwin 0801
Tel: 08 8981 8030
Toll-free tel. (within NT): 1800 629 683
E-mail: cdasweb@taunet.net.au
Western Australia
Eating Disorders Association of Western Australia
PO Box 523
Claremont 6910
Tel: 08 9221 0488
Fax: 08 9221 0499
Introduction
'For the first time in my life I felt that I was talking with someone in a secret language that only the two of us understood ... I had never before met anyone with the same condition. The impact was immense. Here there was someone who could understand and he was not a doctor or a psychologist, and he did not look down upon me from above, or suspiciously at me from the side. He didn't ask me questions to diagnose me and he shared with me openly what he was feeling. Something different, new, right, refreshing. Something that released me from the constant need to keep that terrible secret hidden inside.'1
It is in this way that Shula Alperovitch, a mental health consumer, introduces her first tentative steps of encountering and fostering peer support via a self-help organisation. Variously manifest as patient support organisations, consumer organisations or self-help groups, these organisations are supported by a strong body of literature which points to their importance. Indeed, it shows that they not only provide peer support but can optimise health outcomes.2
There are two types of organisations. First, there are the face-to-face organisations that often operate around particular illnesses. Secondly, there are an increasing number of on-line self-help groups. These can be of particular assistance to people with rarer conditions, and for people who want to find information on sensitive issues or private concerns that they may not otherwise be prepared to raise with a health professional.3
Health professionals may be asked to recommend a self-help group. While the patients will decide which group suits them best, health professionals can provide advice on what questions to ask.
Face-to-face peer support
Many self-help and patient support groups in Australia form at the local level and gradually expand to operate as organisations at the State or Territory level. Some of these organisations have federated at the national level to maximise their lobbying, support and political power. Organisations with a presence across Australia are routinely mentioned in Australian Prescriber. However, there are many patient support organisations which may be of significant assistance but they are not present in all States and Territories. In some States these organisations may be easier to locate if they are members of, or affiliated with, umbrella consumer organisations. Some self-help groups may also be associated with charitable foundations.
There are variations in consumer-controlled self-help groups. They include:
- consumer advocacy groups (where the benefit comes from the outward focus on changing health service delivery and the peer interaction is incidental but still immensely supportive)
- support groups facilitated by non-government organisations (which utilise semi-professional facilitators but rely on peer interaction for their effectiveness).
Some groups are now forming national alliances of related conditions or are forming as national groups for rare conditions (e.g. brain tumours) facilitated by increased access to low cost communications via the internet or teleconferencing.
Making contact
There is no easy way of locating patient support organisations, although a search through the phone book and increasingly the world wide web will often yield results. Even small community organisations these days are increasingly supported by State government programs to provide at least a presence on the internet. Sponsorship of organisations or web sites may also be offered by corporate sponsors such as pharmaceutical companies.
There are individual state directories of self-help groups in electronic and paper formats, but the paper copies quickly become out of date. Some organisations are listed in the Therapeutic Guidelines books and the Australian Prescription Products Guide, while MIMS attaches a listing to the CD-ROM version of its drug guide. Links to some organisations are also to be found on the Commonwealth Government's HealthInsite (www.healthinsite.gov.au). Local councils are a good source of information and often have local directories.
Sadly for rural consumers, many of the state organisations tend to be centred on the capital city. However, contacting the secretariats can still be extremely useful because many organisations have isolated members in rural areas. There is also the organisation Health Consumers of Rural and Remote Australia which can provide guidance (www.ruralhealth.org.au/hcrra/index.html)
Examples of other useful contacts include the Health Consumers' Council of Western Australia (www.hcc-wa.global.net.au), and organisations such as the Collective of Self-Help Groups (http://home.vicnet.net.au/~coshg/) and the Chronic Illness Alliance of Victoria (www.chronicillness.org.au). More specialised contacts include such organisations as Cancer Voices NSW (www.cancervoices.org.au). In Australia a wide variety of self-help organisations with appropriate constitutions geared towards consumer self-help are also members of Consumers' Health Forum of Australia (www.chf.org.au).
On-line self-help groups
Increasingly there is significant activity and development by healthcare consumers on the world wide web.4This movement is particularly important with regard to people who have comparatively rare conditions or want the anonymity of the internet.
'On-line groups - self-help and mutual aid groups - found on internet news groups, commercial information networks, and computer bulletin boards are potential resources ... because they combine the advantages of self-help and the accessibility of computer networks.'5
These on-line groups are important for people who live with chronicity and disability. Searching for these groups can be as simple as using a search engine to trawl the web. However, the questions listed below will be of vital importance in evaluating how useful such on-line contacts are. In addition, it is important to note that while particular protections exist under Australian law with regard to membership of organisations, consumers need to be aware of the fact that Australian laws and conventions (such as consumer protection and privacy) are not necessarily to be found in the global on-line community.
Some questions: making an informed choice
Health professionals may not be aware of the relevant support group for a particular patient, or they may forget to suggest that the patient considers joining a group. In such circumstances, exploring the appropriateness of a choice made independently of a professional can have a vital role in the therapeutic relationship. It is not just a matter of finding an organisation, but also enabling patients and their families to work out whether or not this is the appropriate organisation for them. They should establish whether bias may be introduced into the information given by a sponsor such as a drug company or healthcare provider. It is particularly important that any financial ties or sponsorships which may influence their stance on particular matters such as treatments are known when choosing or evaluating a support group.
Does the organisation provide social and emotional support?
The organisation and its members may provide support or empathy, social support, and the opportunity to explore the fact that 'I am not alone', to express feelings or catharsis, express and develop friendship, and explore 'taboo topics' such as sexuality. Provision of information on the illness and its treatment, for example to dispel mystery or uncertainty, can itself be very emotionally supportive.
What are the origins of the organisation?
For example, it is important to know if a group has been formed by people opposed to a particular treatment, or by researchers trying to recruit a cohort of patients for study.
Is the information about disease/disability reputable and appropriate?
Checking whether or not the organisation is drawing upon reputable healthcare information is vital. Where consumer information is used, such as in qualitative research, about the experience of consumers with a particular condition, has a methodology been used which is open to scrutiny?
Is the organisation democratically accountable?
Checking that the organisation has a constitution which allows participation by members and ensures their rights, including the ability to participate in governance, can be important.
Is there information about funding sources and potential conflict of interest?
The organisation in its publicly available literature (such as an annual report) should make clear where it gets its funding from (including funding for projects). Ask carefully if there are any contractual arrangements with pharmaceutical companies or other healthcare providers, as these arrangements may significantly influence the information provided. The problems include possible bias, and even the possibility of recruitment to a particular trial or treatment to the exclusion of others. Indeed organisations that accept such sponsorship may face constraints in critiquing a particular service or drug.
Does the organisation offer helping mechanisms?
For example, does the organisation provide avenues for problem solving and an exchange of ideas where people can offer specific advice or ask questions? Indeed, does it provide an environment of support where no question about a condition is the 'wrong' question?
Is the organisation disease- or treatment- specific?
While some organisations have developed around particular treatments there is much to be said for suggesting that people take a broader approach to self-help. Organisations revolving around a particular treatment can unnecessarily limit options and information options about other treatments and support.
What are the perceptions of others?
Find out what other people including health professionals (other than members of the management of an organisation) think about that organisation and the contribution it can make. Consumers should be encouraged to talk to a health professional if they think the support organisation is providing misleading or questionable information.
What are the fees and charges?
Informed financial consent is vital. People need to know what they actually get for any membership fees and whether this represents value for money for them. It is important to realise that free or subsidised membership may well reflect corporate sponsorship which may be relevant when considering membership.
Conclusion
Patient support organisations provide significant support which can complement contemporary medical care. There are many advantages in referring patients to self-help groups, but they should ask questions before joining the group. Ask the patients how effective and helpful such organisations are, because many community organisations change over time. Their experience can then inform other patients seeking support.
E-mail: Christopher.Newell@utas.edu.au
Acknowledgement
I acknowledge with gratitude the assistance of Ms H. Hopkins and Mr R. McGowan in researching this article.
References
1. Alperovitch S. The consumer movement in mental health care. Isr J Psychiatry Relat Sci 2002;39:159-64.
2. Trojan A. Benefits of self-help groups: a survey of 232 members from 65 disease-related groups. Soc Sci Med 1989;29:225-32.
3. Hopkins H, Fogg S. Assessing health information on the Internet. Aust Health Consum 2002;2:21-3.
4. Milio N. Engines of empowerment: using information technology to create healthy communities and challenge public policy. Chicago: Health Administration Press; 1996.
5. Finn J. An exploration of helping processes in an online self-help group focusing on issues of disability. Health Soc Work 1999;24:220-31.
Associate Professor C.J. Newell, AM, is a member of the governing committee of Consumers' Health Forum.
Your questions to the PBAC
Australian Prescriber readers are invited to write in with their questions about decisions of the Pharmaceutical Benefits Advisory Committee. The segment 'Your questions to the PBAC' will publish selected questions from readers, and answers from the Committee itself. Questions may address issues such as regulatory decisions, pharmaceutical benefits listings, withdrawal of a drug from the market and Authority prescriptions.
This exclusive arrangement helps Australian Prescriber readers understand how the contents of the Schedule of Pharmaceutical Benefits are determined. The 'yellow book' is published quarterly by the Department of Health and Ageing, and is also available on the internet at www1.health.gov.au/pbs/index.htm. It provides important information for doctors, dentists and pharmacists including a summary of changes to listed items, which medicines are included or excluded from benefit, whether restrictions apply to medicines and how much patients should pay including price premiums for particular brands where applicable.
It may not be possible to reply to all individual questions. The usual editorial controls will apply so that readers' letters and the responses selected by the Editorial Executive Committee will be published in the journal. Letters and responses may be edited before publication.
It may not be possible to reply to all individual questions. The usual editorial controls will apply so that readers' letters and the responses selected by the Editorial Executive Committee will be published in the journal. Letters and responses may be edited before publication.
Glaucoma Australia aims to minimise sight disability from glaucoma by:
- increasing community awareness and understanding of glaucoma and the need for regular eye checks
- supporting glaucoma patients and their families particularly with information
- funding glaucoma research.
Glaucoma Australia disseminates a newsletter and information about new developments in glaucoma medicines, diagnostic equipment and therapeutic procedures. Glaucoma Australia Support Groups in most States provide, through guest speakers, education and information on glaucoma, and members offer mutual support to glaucoma sufferers, their families and friends.
Contacts
Glaucoma Australia Inc.
1st Floor AMA House
33-35 Aitchison Street
St Leonards NSW 2065
PO Box 420
Crows Nest NSW 1585Web site: www.glaucoma.org.au
Phone: (02) 9906 6640, Free call 1800 500 880
E-mail: glaucoma@glaucoma.org.au
For details on glaucoma meetings in South Australia, Tasmania and Victoria contact the Glaucoma Australia Melbourne office, phone (03) 9404 2974.
| Australian Medicines Handbook, 4th edition 2003 | ||
|
Haemochromatosis Australia is the support and advocacy group for people affected by haemochromatosis. It aims to increase early diagnosis and treatment by supporting its members, spreading awareness in the community and medical profession, and encouraging research.
Haemochromatosis Australia provides services including an information phoneline, a website, newsletters and publications to help people with haemochromatosis, their families and supporters to understand the condition and manage their health in partnership with their doctor. Support and information sessions are held at different locations across the country.
Contact
Info line 1300 019 028
Website www.haemochromatosis.org.au
Address PO Box 154, Coopers Plains, Qld 4108
The Ménière's Support Group assists with providing community support for people who have Ménière's disease. It produces a quarterly magazine and holds meetings for members, their families and friends. Resources such as fact sheets, information packs and videos are available from the state offices, from the Ménière's Resource and Information Centre and via an online catalogue (www.menieres.org.au). Health professionals interested in learning more about Ménière's disease are encouraged to use these resources. At present three state offices provide support and services to all states.
Contacts
Website: www.menieres.org.au
Email: info@menieres.org.au
Ménière's Support Group of Victoria Inc. and Ménière's Resource and Information Centre
Suite 4, 18-28 Skye Rd
Frankston 3199
Phone: (03) 9783 9233
TTY: (03) 9781 4190
Fax: (03) 9783 9208
Enquiries from South Australia and Western Australia should also be directed here. Email: info@menieres.org.au
Ménière's Support Group of NSW Inc.
PO Box 2414
BOWRAL NSW 2576
Phone: (02) 4861 3751
Email: info@menieresnsw.org.au
Enquiries from Queensland and Northern Territory should also be directed here. There are also offices in Sydney, Newcastle, Dubbo and Mudgee.
Ménière's Support Group of Tasmania Inc.
PO Box 202
MOONAH TAS 7009
Phone: (03) 6234 1494
Website: www.msgtas.org.au
There are MS Societies in all States of Australia. These State Societies provide information and education for people with MS, families, carers and health professionals as well as the general community. They promote awareness of MS, and raise funds for research and service provision. They also provide support services such as the Immunotherapy Support Programs whereby MS Society nurses give information regarding the immune-modulating drugs, teach self-injection techniques, and offer ongoing support and advice in the management of any side effects.
MS Australia represents the national interests of people with MS, promotes and funds research and produces the quarterly magazine 'MS Life'.
Contacts
Tel: 1800 2873 67 (1800 CURE MS)
E-mail: public@mssociety.com.au
Web site: www.msaustralia.org.au
Australian Capital Territory
Gloria McKerrow House
117 Denison Street
DEAKIN ACT 2600
Tel: (02) 6285 2999, Freecall: 1800 356 354
Fax: (02) 6281 0817
New South Wales
Private Bag Q1000
QVB Post Office
SYDNEY NSW 2000 Tel: (02) 9287 2929, Infoline: 1800 042 138
Fax: (02) 9287 2987
Northern Territory & South Australia
274 North East Road
KLEMZIG SA 5087
Tel: (08) 8360 3800, Free call: 1800 812 311
Fax: (08) 8360 0899
PO Box 711
PARAT NT 0804
Tel: (08) 8949 5300
Fax: (08) 8948 5344
Queensland
Locked Bag 370
COORPAROO DC QLD 4151
Tel: (07) 3840 0888, Freecall: 1800 177 591
Fax: (07) 3840 0813
Tasmania
Locked Bag 4
SANDY BAY TAS 7005
Tel: (03) 6224 4111, Free call: 1800 676 721
Fax: (03) 6224 4222
Victoria
54 Railway Road
(Private Bag 900)
BLACKBURN VIC 3130
Tel: (03) 9845 2700
Free call: 1800 CURE MS (1800 2873 67)
Western Australia
Locked Bag 2
BENTLEY DELIVERY CENTRE WA 6983
Tel: (08) 9365 4888
Fax: (08) 6451 4453
See articles on multiple myeloma: Screening for multiple myeloma and New drugs for multiple myeloma
The Myeloma Foundation is a volunteer-driven, non-profit organisation which supports and informs those living with the disease and educates those involved in its care and treatment. A telephone support line is staffed by myeloma support nurses. The Foundation runs seminars and workshops, support groups and health professional education. The website contains informative videos and fact sheets, links to a patient guide and a newsletter, and resources for health professionals such as the myeloma nurses' learning program.
Website www.myeloma.org.au
Myeloma support line 1800 693 566 (free call, Mon–Fri working hours)
NAPWA is Australia's national peak organisation representing people living with HIV. Its website has a range of resources and links to its member organisations in every state and territory.
NAPWA promotes access to the latest treatments for those who need them. It produces educational resources, provides training in HIV medicine for community workers, and collaborates with healthcare professionals, researchers, government and pharmaceutical companies.
Contact
Website www.napwa.org.au
National office PO Box 917, Newtown, Sydney NSW 2042
Phone (02) 8568 0300 or freecall 1800 259 666
There are member organisations in every state and territory. Contact the national office for up-to-date details.
The National Epilepsy Association of Australia (NEAA) was established in October 1983 as a national charitable non-profit organisation dedicated to improving the quality of life of people with epilepsy. It comprises state and territory epilepsy associations and related medical associations: Epilepsy Society of Australia, Australian Association of Neurologists, Australian College of Paediatrics, Royal Australian College of General Practitioners and the Australian Brain Foundation.
There are a number of relevant publications available from state and local epilepsy associations, including information pamphlets, posters, manuals, research reports, video instruction kits, a computer program and the NEAA quarterly newsletter.
Contacts
National Office
National Epilepsy Association of Australia Inc.
PO Box 879
Epping NSW 2121
Tel: 02 9869 8444
Fax: 02 9869 4122
New South Wales
Epilepsy Association of NSW
PO Box 879
Epping 2121
Tel: 02 9869 8444
Fax: 02 9869 4122
Victoria
Epilepsy Foundation of Victoria
818-822 Burke Road
Camberwell 3124
Tel: 03 9813 2866
Fax: 03 9882 7159
Queensland
Epilepsy Queensland Inc.
PO Box 1450
Fortitude Valley 4006
Tel: 07 3852 2850
Fax: 07 3852 1864
South Australia
Epilepsy Association of SA Inc.
PO Box 12
Woodville 5011
Tel: 08 8445 6131
Fax: 08 8445 6387
Western Australia
West Australian Epilepsy Association Inc.
14 Bagot Road
Subiaco 6008
Tel: 08 9381 1187
Fax: 08 9381 1363
Tasmania
Epilepsy Association of Tasmania Inc.
82 Hampden Road
Battery Point 7004
Tel: 03 6234 6967
Fax: 03 6234 6967
Australian Capital Territory
Epilepsy Association of the ACT
PO Box 3744
Weston Creek 2611
Tel: 02 6287 4555
Fax: 02 6287 4556
Panic and anxiety disorders associations/ foundations Community organisations in several states provide counselling, education and support to people living with panic and anxiety disorders. Services include telephone counselling, support groups, workshops, books and tapes, and a wide range of programs.
Contacts
A.C.T.
Anxiety Support Group
Tel: 0500 806 500
New South Wales
Mental Health Information Service
Tel: (02) 9816 5688; 1800 674 200
Web site: www.nswamh.org
Anxiety Disorders Foundation
Tel: (02) 9963 3494
Fax: (02) 9716 0416
Northern Territory
Anxiety Disorders Foundation
Tel: (08) 8927 9411
Queensland
Mental Health Association
Tel: (07) 3358 4988
Fax: (07) 3254 1027
E-mail:
Panic Anxiety Disorders Association
Tel: (07) 3353 4851
South Australia
Panic Anxiety Disorders Association
PO Box 83 FULLARTON SA 5063
Tel: (08) 8373 2161
Fax: (08) 8373 2090
E-mail:
Victoria
Anxiety Disorders Association
Tel: (03) 9853 8089
E-mail:
Web site: www.adavic.org.au
Anxiety Recovery Centre
PO Box 358 MT WAVERLEY VIC 3149
Tel: (03) 9576 2477
Fax: (03) 9576 2499
E-mail:
Panic Anxiety Disorders Association
Tel: (03) 9889 6760
Fax: (03) 9889 1022
E-mail:
Web site: www.tranx.org.au
Western Australia
Panic Anxiety Disorders Association
PO Box 130 NEDLANDS WA 6909
Tel: (08) 9380 9898
E-mail:
Contacts
Parkinson's Australia
c/- Parkinson's Victoria
20 Kingston Road
CHELTENHAM VIC 3192
Tel (03) 9551 1122
Fax (03) 9551 1310
National free call: 1800 644 189
Web site:
www.parkinsons.org.au
Australian Capital Territory
Parkinson's Australian Capital Territory
PO Box 717
MAWSON ACT 2607
Tel (02) 6290 1984
Fax (02) 6286 4475
New South Wales
Parkinson's New South Wales
Level 1
25 Khartoum Rd
NORTH RYDE NSW 2113
Tel (02) 8875 8900
Fax (02) 8875 8999
E-mail:
Queensland
PO Box 8075
WOOLLOONGABBA QLD 4012
Tel (07) 3391 3877
E-mail:
South Australia and Northern Territory
Parkinson's Syndrome Society of SA
Neurological Resource Centre
23a King William Road
UNLEY SA 5061
E-mail:
Tasmania
Parkinson's Tasmania
17 St Helen St
LINDISFARNE TAS 7015
Tel (03) 6243 6510
Fax (03) 6243 6510
E-mail:
Victoria
Parkinson's Victoria
20 Kingston Road
CHELTENHAM VIC 3192
Tel (03) 9551 1122
Fax (03) 9551 1310
Email:
Western Australia
Parkinson's Western Australia Centre for Neurological Support
The Niche Suite B 11 Aberdare Road
NEDLANDS WA 6009
Tel (08) 9346 7373
Fax (08) 9346 7374
Email:
Website: www.parkinsonswa.org.au
beyondblue
beyondblue is an Australian independent not-for-profit organisation working to address issues associated with depression, anxiety and related substance misuse disorders. The beyondblue website has informative sections on depression, postnatal depression, anxiety and bipolar disorder. It has recommended links to additional information and contacts in every state and territory.
Website: www.beyondblue.org.au
Telephone information line: 1300 22 4636
Post and Ante Natal Depression Association (PANDA)
PANDA is a Victorian not-for-profit self-help organisation that provides confidential information, support and referral to those affected by post- and antenatal mood disorders, including partners and extended family members. PANDA produces and distributes accurate information about post- and antenatal mood disorders to health professionals and the wider community, in the form of:
- resources and information on antenatal and postnatal depression and postpartum psychosis, on the website and in paper copy
- telephone support and information
- information and referral details for supports and services in your area
- newsletters for members.
Website: www.panda.org.au
Telephone: 1300 726 306 Victoria, (03) 9481 3377 outside Victoria
The need to establish post-polio networks arose when it appeared that about70% of the people who had contracted polio 20-30 years ago were experiencing new difficulties and required support. These difficulties were new muscle weakness, joint and muscle pain, breathing problems and extreme fatigue. This was a new aspect of polio and only by a combined effort of people who had had polio could acceptance of these new symptoms by health professionals be achieved. These symptoms became known as the post-polio syndrome.
The objectives of the networks are:
- to provide advice through an information kit and regular newsletters on the late effects of polio, where to get help and self-help practices
- to act as a support network for people who have had polio
- to encourage the interchange of thoughts and experiences through seminars and local support groups
- to encourage research into the late effects of polio.
Although each State network is an autonomous body, interchange of ideas through conferences and seminars takes place.
Contacts:
New South Wales
Post-Polio Network (NSW) Inc.
PO Box 888
Kensington 2033 Tel: (02) 636 6515
Victoria
Australian Polio Network
PO Box 1189
Collingwood 3066
Tel: (03) 415 1200
Queensland
Post Polio Support (Qld)
PO Box 5651
West End 4101
Tel: (07) 844 7311
South Australia
Post Polio Support Group of SA (Inc.)
c/- The Neurological Resource
Centre of SA (Inc.)
37 Woodville Road
Woodville 5011
Tel: (08) 268 6222
Western Australia
Post Polio Network of WA
PO Box 257
Subiaco 6008
Tel: (09) 3810170
WA Post Polio Support Group
Bunbury (Inc.)
Unit 29 Wattle Hill Lodge
Bunbury 6230
Tel: (097) 215845
Tasmania
Tas Polio Support
51 Tottenham Road
Gagebrook 7030
Tel: (002) 63 6236
Website: www.polioaustralia.org.au
See also dental note on this article
See also article on Treatments for severe psoriasis
Psoriasis Australia provides information about psoriasis, and support to people with psoriasis, to enable informed decisions on treatment choices and lifestyle. It provides pamphlets and other material for health professionals and the public. Although based in Victoria it is a national organisation.
Website: http://home.vicnet.net.au/~psorias/
Email:
Phone: (03) 9813 8080 Thursdays 10 am - 1pm
Address: 334 High Street ASHBURTON VIC 3147
Retina Australia is a national peer support organisation concerned with retinal diseases, including macular degeneration. Through its State and Territory branches Retina Australia offers voluntary peer support to sufferers of retinal disease. It publishes a wide range of information on retinal disease, some of which is available on its web site. Retina Australia also raises funds for scientific research into the causes, prevention and cure of retinitis pigmentosa and other retinal dystrophies.
The National President of Retina Australia has described living with a visual disability in A degree of vision (Personal paper), Lancet 2000;356:1517-9.
Contacts
Web site: www.retinaaustralia.com.au
E-mail: admin [at] retinaaustralia.com.au
Toll free number: 1800 999 870
The Schizophrenia Fellowship works with people with mental illness, their families and friends to reduce the stigma associated with mental illness. We advocate for improved services and support and undertake research into causes, treatment and effective care of those living with mental illness, their families and friends. We do this through community education, advocacy and service delivery.
Services include in-home and residential respite, residential rehabilitation, face-to-face counselling support and information, support groups, family and community education, home-based outreach support services and day programs.
Contacts
National Office
Schizophrenia Fellowships Council of Australia
PO Box 111
NORTH RYDE NSW 1670
Tel: 02 9878 8402
Fax: 02 9878 1270
E-mail: sfca@ozemail.com.au
Australian Capital Territory
Canberra Schizophrenia Fellowship
PO Box 3807
WESTON CREEK ACT 2611
Tel: 02 6287 4214
E-mail: mhr@cyberone.com.au
New South Wales
Schizophrenia Fellowship of New South Wales
PO Box 111
NORTH RYDE NSW 1670
Tel: 02 9878 2053
Fax: 02 9878 1270
E-mail: sfnsw@hi-speed.com.au
http://www.sfnsw.webcentral.com.au
South Australia
Schizophrenia Fellowship of South Australia
PO Box 310
MARLESTON SA 5033
Tel: 08 8221 5160
Fax: 08 8221 5159
Queensland
Schizophrenia Fellowship of North Queensland
PO Box 979
HYDE PARK QLD 4812
Tel: 07 4725 3664
Fax: 07 4725 3819
Schizophrenia Fellowship of South Queensland
95 Arthur Street
FORTITUDE VALLEY QLD 4006
Tel: 07 3358 4424
Fax: 07 3254 1770
E-mail: sfsq@logicworld.com.au
Victoria
Schizophrenia Fellowship of Victoria
PO Box 359
CLIFTON HILL VIC 3068
Tel: 03 9482 4199
Fax: 03 9482 4871
E-mail: admin@sfv.org.au
Western Australia
Schizophrenia Fellowship of Western Australia
PO Box 1243
SUBIACO WA 6904
Tel: 08 9380 6688
Fax: 08 9380 6699
Northern Territory
Darwin Urban Mental Health Services N.T.
Tamarind Centre
PO Box 40596
CASUARINA NT 0811
Tel: 08 8999 4988
Fax: 08 8999 4999
Tasmania
Schizophrenia Fellowship of Tasmania
95-97 Campbell Street
HOBART TAS 7000
Tel: 03 6236 9286
Fax: 03 6236 9301
The Australian Lung Foundation promotes understanding, management and relief of lung disease. It has over 100 patient support groups in metropolitan and regional areas of all the states and territories. For patients and carers the Foundation produces a range of fact sheets and illustrations, written in non-scientific language, about respiratory diseases and lung health. These fact sheets can be ordered or downloaded from the website, which also contains lists of pulmonary rehabilitation programs, internet support groups, links to further information, and materials for healthcare professionals.
Contacts
Phone 1800 654 301
Website www.lungnet.com.au
The Coeliac Society of Australia supports people who have been diagnosed with coeliac disease, and their families. It also supports sufferers of dermatitis herpetiformis and those medically diagnosed as requiring a gluten-free diet.
The State and Territory societies (see below) give advice and information about the gluten-free diet, ingredients and where to buy them, recipes and cooking, overseas travel, educational material, and research into coeliac disease. The Society works with food authorities and manufacturers to promote standards and labelling of food products.
Support groups have been set up throughout the States and Territories. Coeliac Awareness Week is held each year in March.
Contacts
Web site: www.coeliac.org.au
ACT and New South Wales
PO Box 703, Chatswood NSW 2057
Tel: (02) 9411 4100
Fax: (02) 9413 1296
Queensland
Level 1, Local Government House
25 Evelyn Street, Newstead QLD 4006
PO Box 2110, Fortitude Valley BC 4006
Tel: (07) 3854 0123
Fax: (07) 3854 0121
E-mail: coelqld@xenon.net
South Australia and Northern Territory
Unit 5, 88 Glynburn Road, Hectorville SA 5073
Tel: (08) 8365 1488
Fax: (08) 8365 1265
Tasmania
PO Box 159, Launceston TAS 7250
Tel: (03) 6427 2844
Fax: (03) 6427 3248
Victoria
11 Barlyn Road, Mt Waverley VIC 3149
PO Box 89, Holmesglen VIC 3148
Tel: (03) 9808 5566
Fax: (03) 9808 9922
Western Australia
Anzac Cottage, 38 Kalgoorlie Street
Mt Hawthorn WA 6016
PO Box 245, Mt Hawthorn WA 6016
Tel: (08) 9444 9200
Fax: (08) 9444 9255
Trigeminal Neuralgia Association of Australia
The Trigeminal Neuralgia Association provides information and support to patients, families and friends of those with trigeminal neuralgia. In addition there are support groups in most states (New South Wales, Victoria, Queensland and South Australia). Members receive monthly newsletters. The Association is affiliated with the US Trigeminal Neuralgia Association.
Phone: (02) 4579 6226
Email: tna_sydney@yahoo.com
Website: www.tnaaustralia.org.au
US website: www.tna-support.org
