Living with scleroderma can feel overwhelming, but you don’t have to navigate it alone. Whether you’re newly diagnosed, looking for practical support, connecting with others, or seeking reliable information, we’re here to help.
New to Scleroderma?
If you or a loved one has recently been diagnosed, it’s natural to have questions.
Start Here
- Learn more about scleroderma and its symptoms
- Understand the different types of scleroderma
- Find specialist healthcare provider
- Become a financial member
Connect With Others
Connecting with people who understand your experience can make a significant difference.
Support Groups
Join one of our support groups to:
- Share experiences in a safe environment
- Learn practical coping strategies
- Build friendships and support networks
- Stay informed about events and research
Everything You Ever Wanted to Know About Scleroderma Support Groups
You can also reach out to supportgroups@sclerodermavictoria.com.au to find out more.
Resources
Practical Support & Everyday Living
Scleroderma can affect many aspects of daily life. The following services may help.
Health Care Planning
If you have a chronic condition, your GP may be able to prepare a Chronic Disease Management Plan to help coordinate your care.
NDIS and Disability Supports
The National Disability Insurance Scheme (NDIS) provides eligible people with support to achieve their goals and participate in everyday life.
Financial Assistance
Some people with scleroderma may be eligible for assistance such as:
- Medical Cooling Concession
- How to claim Essential Medical Equipment Payment
- Disability-related supports
- Victorian Patient Transport Assistance Scheme
- Services Australia – Mobility Allowance
Useful Organisations
Support Across Australia
Scleroderma Victoria
Scleroderma Victoria provides support for people living in Victoria, Tasmania, South Australia and Western Australia.
Scleroderma New South Wales
The Scleroderma Association of NSW provides support for people in NSW and the ACT.
Scleroderma Queensland
The Scleroderma Association of Queensland supports people in Queensland and the Northern Territory.
National & International Resources
Australia
- Scleroderma Australia
- Arthritis Australia
- Lung Foundation Australia
- Pulmonary Hypertension Association Australia
- Sjogrens Australia
International
Connect with reputable scleroderma organisations worldwide:
- FESCA (Europe)
- Scleroderma Canada
- Scleroderma & Raynaud’s UK
- National Scleroderma Foundation USA
- Scleroderma Patient Intervention Network (SPIN)
Advocacy & Community
Scleroderma Victoria works alongside state, national and international organisations to improve awareness, support research, and advocate for better outcomes for people living with scleroderma.
Learn how you can:
Need Help Finding the Right Support?
Not sure where to start? Contact Scleroderma Victoria and we’ll help connect you with the most appropriate support, information, or services for your situation.
Contact Us