Scleroderma Victoria is proud to be associated with the national and international scleroderma community. These organisations provide valued support, assistance and resouces to those suffering from 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

Paul Hadfield
paul.hadfield67@bigpond.com
0484342925

Bendigo

Judy Browning
judybrowning2@bigpond.com
03 5437 3305

Geelong

Janelle Blight
dermageelong@gmail.com
0413046110

Gippsland

Corrie Hemming
corriehemming@bigpond.com
0400331829

Hobart

Sally Westbury
sally@westbury.name
0414096881

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

Yvonne Hoffmann
yhoffmann39@gmail.com
03 9743 1009

Helpful Contacts

Scleroderma Australia

The purpose of Scleroderma Australia is to:

  • Promote Scleroderma awareness on a National basis
  • Disseminate information about Scleroderma
  • Fund and coordinate Scleroderma research on a National basis
  • Advocate for improved and ongoing support for Scleroderma patients

Scleroderma Australia Inc.
C/- St  Vincent’s Hospital
41 Victoria Parade
FITZROY Vic 3065

Telephone: 02 9990 5159

Visit Scleroderma Australia website

Arthritis 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 website

Chronic 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 website

Medical 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

Visit Medical Cooling Concession website

Better Health Channel

Health and medical information for consumers, quality assured by the Victorian government.

Visit Better Health Channel website

Chronic 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 website

Healthdirect Australia

Healthdirect Australia is a non-commercial, government funded
organisation providing trusted health information to all Australians.

Visit Healthdirect Australia website

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 website

5 things you need to know about the NDIS in Victoria

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 5 things you need to know about the NDIS in Victoria website

WB 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 website

State 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. website

The Lupus Association of NSW Inc.

The Lupus Association of NSW Inc.
PO Box 89
North Ryde
NSW 1670
Australia

Telephone: 1800 802 088 (NSW Country & Interstate)

Telephone: 02 9878 6055 (For callers in and around the Sydney area)

Visit The Lupus Association of NSW Inc. website

ARRC – 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 website

Western 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 website

Queensland & Northern Territory

The Scleroderma Association of Queensland Inc.

The Scleroderma Association of Queensland Inc. also provides support for those living in the Northern Territory.

The Scleroderma Association of Queensland Inc.
PO Box 316
Salisbury QLD 4107

Telephone: 0497 588 538
Facsimile: 07 3277 3460
Email: sclero@pacific.net.au

 

Visit The Scleroderma Association of Queensland Inc. website

South Australia

Lupus/Scleroderma/Sjogren’s Support Group

Lupus/Scleroderma/Sjogren’s Support Group
118 Richmond Road
Marleston SA 5033

Contact Sharon Jones

Telephone: 08 8379 5711

Email: info@arthritissa.org.au

Visit Lupus/Scleroderma/Sjogren’s Support Group website

Tasmania

Scleroderma Victoria Inc.

Scleroderma Victoria also provides support for those in Tasmania. Scleroderma Victoria is run by volunteers and aims to support sufferers coping with scleroderma.

Scleroderma Victoria
St Vincent’s Hospital
41 Victoria Parade
FITZROY VIC 3065

Telephone: 03 9288 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:

  • Promote Scleroderma awareness on a National basis
  • Disseminate information about Scleroderma
  • Fund and coordinate Scleroderma research on a National basis
  • Advocate for improved and ongoing support for Scleroderma patients

Scleroderma Australia Inc.
C/- St  Vincent’s Hospital
41 Victoria Parade
FITZROY Vic 3065

Telephone: 02 9990 5159

Visit Scleroderma Australia website

The 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 website

PHA 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 website

Arthritis 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 website

Europe

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 website

Canada

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 website

Argentina

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.) website

United 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 website

The 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 website

Ireland

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) website

USA

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 website

International 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 website

Scleroderma Info

Scleroderma Info is an online guide to Scleroderma Resources. 

Visit Scleroderma Info website