Scleroderma Victoria is proud to be associated with the national and international scleroderma community. These organisations provide valued support, assistance and resources to people with scleroderma and their friends and families.
Help and Support
Support Groups
Scleroderma Victoria Support Group Guidelines
Albury/Wodonga
Kaye Dando
kcamry54@hotmail.com
0459234690
Ballarat
Looking for a new leader
Bendigo
Looking for a new leader
Geelong
Janelle Blight
dermageelong@gmail.com
0413046110
Gippsland
Jenny Banwell
suportgroups@sclerodermavictoria.com.au
0422600446
Hobart
Angela Bull
ab1057@bigpond.net.au
Inner South Eastern Suburbs
Lynette Slade
l.slade@bigpond.com
03 9576 4066
Mornington Peninsula/Westernport
Louise Inglese
louise@geni.id.au
0409935017
Narre Warren
Barbara Handasyde
0457123447
North Eastern Suburbs
Jane Rhyder
janerhyder@optusnet.com.au
03 9444 6900
Western Suburbs
Melanie (Mel) Nadjidai,
melnad@myyahoo.com
0402080544
Helpful Contacts
Scleroderma Australia
The purpose of Scleroderma Australia is to:
- Coordinate and promote scleroderma awareness across Australia
- Increase community support and engagement for people with scleroderma and their families
- Advocate for people with scleroderma for improved patient outcomes
- Coordinate funding for scleroderma research across Australia
- Support state associations to provide successful and sustainable outcomes.
Scleroderma Australia Inc.
PO Box 57
MELTON VIC 3337
Telephone: 02 9990 5159
Visit Scleroderma Australia websiteArthritis Victoria inc. Osteoporosis Victoria
Help for people with a condition affecting muscles, bones or joints.
263 Kooyong Road
Elsternwick Vic 3165
Phone: 1800 263 265
Email: afv@arthritisvic.org.au
Visit Arthritis Victoria inc. Osteoporosis Victoria websiteChronic Disease Management — GP services
The Chronic Disease Management — GP services on the Medicare Benefits Schedule (MBS) enable GPs to plan and coordinate the health care of patients with chronic or terminal medical conditions, including patients with these conditions who require multidisciplinary, team-based care from a GP and at least two other health or care providers.
Visit Chronic Disease Management — GP services websiteMedical Cooling Concession
If you have a condition that impairs the body’s ability to regulate its own temperature, you may be eligible for the Medical Cooling Concession. Other qualifying conditions include: motor neurone disease, muscular dystrophy, quadriplegia, scleroderma and systemic lupus erythematosus (SLE).
Department of Health & Human Services
50 Lonsdale Street
Melbourne, Victoria 3000
Tel: 1300 650 172
Tel: (61 3) 9096 0000
Better Health Channel
Health and medical information for consumers, quality assured by the Victorian government.
Visit Better Health Channel websiteChronic Illness Alliance
The Chronic Illness Alliance has 55 member organisations, both state and national. The aim of the Alliance is to build a better focus in health policy and health services for all people with chronic illnesses. It does this through education and research projects.
587 Canterbury Rd
Surrey Hills Vic 3127
Phone: 03 8809 0641
Email: cwalker@chronicillness.org.au
Visit Chronic Illness Alliance websiteHealthdirect Australia
Healthdirect Australia is a non-commercial, government funded
organisation providing trusted health information to all Australians.
Independence Australia
Independence Australia is a social enterprise that provides choices for people living with a disability or other personal need, supporting them to regain and retain their independence.
Building 46 / 9 Ashley St
West Footscray Vic 3012
Phone: 1300 788 855
Email: customerservice@independenceaustralia.com
Visit Independence Australia websiteWhat is the NDIS?
The National Disability Insurance Scheme (NDIS) is the new way of providing individualised support for people with disability, their families and carers. The NDIS is the insurance that gives us all peace of mind. Disability could affect anyone and having the right support makes a big difference.
The NDIS provides eligible people a flexible, whole-of-life approach to the support needed to pursue their goals and aspirations and participate in daily life.
Visit What is the NDIS? websiteWB Gadd fine wool and merino possum
WB Gadd fine wool and merino possum stock gloves and many other items to help you survive the cold winter.
1 Queen St
Avenel Vic 3664
Phone: 03 5796 2469
Email: enquiries @wbgadd.com
Visit WB Gadd fine wool and merino possum websiteState Organisations
New South Wales & Australian Capital Territory
The Scleroderma Association of New South Wales Inc.
Scleroderma NSW also provides support for those in the ACT.
Scleroderma Association of NSW Inc.
PO Box 227
ASHFIELD
NSW 1800
Telephone: 02 9798 7351
Free Call: 1800 068 061
Fax: 02 9798 7985
Email: sclerodermansw@tpg.com.au
Visit The Scleroderma Association of New South Wales Inc. websiteARRC – Autoimmune Resource & Research Centre
HAPS Building
John Hunter Hospital
Locked Bag 1
Hunter Region Mail Centre 2310
Email: ARRC@hnehealth.nsw.gov.au
Telephone: 02 4921 4095
Visit ARRC – Autoimmune Resource & Research Centre websiteWestern Australia
Arthritis Foundation of WA
Arthritis Foundation of WA
17 Lemnos Street
Shenton Park
WA 6008
Telephone: 08 9388 2199
Email: general@arthritiswa.org.au
Visit Arthritis Foundation of WA websiteQueensland & Northern Territory
The Scleroderma Association of Queensland Inc.
The Scleroderma Association of Queensland Inc. also provides support for people living in the Northern Territory.
The Scleroderma Association of Queensland Inc.
PO Box 316
Salisbury QLD 4107
Phone: 0468 801 021
Email: scleroqld@gmail.com
Visit The Scleroderma Association of Queensland Inc. website
South Australia
Lupus/Scleroderma/Sjogren’s Support Group
Lupus / Scleroderma / Sjogren’s Support Group
111A Welland Ave
Welland SA 5007
Contact: Health Services Team
Ph: 08 8379 5711
Email: info@arthritissa.org.au
You can also contact the Scleroderma Australia delegate for South Australia at sa@sclerodermaaustralia.com.au
Visit Lupus/Scleroderma/Sjogren’s Support Group websiteTasmania
Scleroderma Victoria Inc.
Scleroderma Victoria also provides support for those in Tasmania. Scleroderma Victoria is run by volunteers and aims to support people with scleroderma.
Scleroderma Victoria
PO Box 57
MELTON VIC 3371
Telephone: 03 9231 3651
Email: enq@sclerodermavictoria.com.au
Visit Scleroderma Victoria Inc. website
National and International Organisations
Australia
Scleroderma Australia
The purpose of Scleroderma Australia is to:
- Coordinate and promote scleroderma awareness across Australia
- Increase community support and engagement for people with scleroderma and their families
- Advocate for people with scleroderma for improved patient outcomes
- Coordinate funding for scleroderma research across Australia
- Support state associations to provide successful and sustainable outcomes.
Scleroderma Australia Inc.
PO Box 57
MELTON VIC 3337
Telephone: 02 9990 5159
Visit Scleroderma Australia websiteThe Continence Foundation of Australia
The Continence Foundation of Australia is the national peak body promoting bladder and bowel health. Our vision is to have a community free of the stigma and restrictions of incontinence.
Visit The Continence Foundation of Australia websitePHA Australia
PHA Australia brings hope and a better understanding of pulmonary arterial hypertension to many families throughout the Australia and the world.
Email: admin@phaaustralia.com.au
Visit PHA Australia websiteArthritis Australia
Nearly one in five Australians – that’s 3.85 million people – has arthritis. Arthritis Australia is a charitable not-for-profit organisation, and is the peak arthritis body in Australia. It is supported by affiliate offices in every state and territory.
Arthritis Australia
Level 2/255 Broadway
GLEBE NSW 2037
Telephone: 1800 011 041
Email: info@arthritisaustralia.com.au
Visit Arthritis Australia websiteEurope
FESCA
Federation of European Scleroderma Associations (FESCA) acts at a pan-European level to promote and achieve its objectives in alignment with the aims of the national groups it represents. As an umbrella group, FESCA supports its member organizations, while the support of individual sufferers of scleroderma remains the sole remit of national organizations.
Email: info@fesca-scleroderma.eu
Visit FESCA websiteCanada
Scleroderma Society of Canada
The Scleroderma Society of Canada is a registered charity, staffed entirely by volunteers, dedicated to serving the interests of those concerned with the disease called scleroderma, or systemic sclerosis.
41 King William Street, Suite 203
Hamilton, Ontario L8R 1A2
Toll Free: 1-866-279-0632
Email: info@sclerodermacanada.ca
Visit Scleroderma Society of Canada websiteArgentina
Asociación Argentina de Esclerodermia y Raynaud (A.A.D.E.Y.R.)
Association of Scleroderma and Raynaud Argentina is a public, non-profit organization, aimed at developing communication channels and links between patients, families and medical staff in order to inform about scleroderma and Raynaud’s phenomenon.
Telephone: +54 11 4829 7191
Email: info@esclerodermia.org.ar
Visit Asociación Argentina de Esclerodermia y Raynaud (A.A.D.E.Y.R.) websiteUnited Kingdom
Raynaud’s & Scleroderma Association
The Raynaud’s & Scleroderma Association, is a national charity and self help organisation, committed to supporting people who have these conditions and their carers.
The Raynaud’s & Scleroderma Association
112 Crewe Road
Alsager, Cheshire
ST7 2JA
United Kingdom
Telephone: 01270 872776 or 0800 9172494
Facsimile: 01270 883556
Email: info@raynauds.org.uk
Visit Raynaud’s & Scleroderma Association websiteThe Scleroderma Society
The Scleroderma Society was founded in 1982 to provide support for both people with scleroderma and their families. Doctors specialising in this field were aware that people with scleroderma often felt isolated and alone given the rarity of the condition, so the Society was established to provide support and information about scleroderma to anyone affected.
The Scleroderma Society
PO BOX 581
CHICHESTER
PO19 9EW
Telephone: 0800 311 2756
Email: info@sclerodermasociety.co.uk
Visit The Scleroderma Society websiteIreland
Irish Raynaud’s & Scleroderma Society (IRSS)
The Irish Raynaud’s & Scleroderma Society (IRSS) was formed in 1988, and is a registered charity and a limited company. Funded by the generosity of volunteers and sponsors, we work constantly to help sufferers face two very challenging conditions. We help people to live as normal a life as possible, to learn how to cope with Raynaud’s and understand their Scleroderma.
The Irish Raynaud’s & Scleroderma Society
Paradigm House
Dundrum Office Park
Dundrum
Dublin 14
Telephone: 012020184 or 012148950
Email: info@irishraynauds.com
Visit Irish Raynaud’s & Scleroderma Society (IRSS) websiteUSA
Scleroderma Foundation
The Scleroderma Foundation is the national organization for people with scleroderma and their families and friends. It was formed January 1, 1998, by a merger between the West Coast-based United Scleroderma Foundation and the East Coast-based Scleroderma Federation.
Scleroderma Foundation – National Office
300 Rosewood Drive, Suite 105
Danvers, MA 01923
Main Phone Number: (978) 463-5843
Toll-free Information Line: (800) 722-HOPE (4673) – (8:30 a.m. to 5 p.m. Eastern, Monday through Friday)
Fax: (978) 463-5809
Email: sfinfo@scleroderma.org
Visit Scleroderma Foundation websiteInternational Scleroderma Network
Provided by the by the nonprofit International Scleroderma Network, sclero.org provides a wealth of resources related to scleroderma.
Telephone: 1-800-564-7099
Email: isn@sclero.org
Visit International Scleroderma Network websiteScleroderma Info
Scleroderma Info is an online guide to Scleroderma Resources.
Visit Scleroderma Info website