14 Aug Help Shape the Future of Scleroderma Australia
Share Your Voice – Community Consultation Open Now
In 2026, Scleroderma Australia proudly celebrated its 20th Anniversary.
For two decades, we have worked alongside people living with scleroderma, families, carers, health professionals, researchers and advocates to improve awareness, support research, strengthen connections and advocate for better outcomes across Australia.
As we look towards the future, we are asking an important question:
What should Scleroderma Australia focus on over the next five years?
To help answer this question, Scleroderma Australia recently brought together people with lived experience, clinicians, researchers, advocates and partners for a 20th Anniversary Workshop. The workshop explored the biggest challenges facing the scleroderma community and identified a range of potential solutions and future opportunities.
These discussions led to a shared ambition:
A consistent and timely person-centred approach to diagnosis, treatment and support for the scleroderma community across Australia.
The workshop identified four key areas for future focus:
Importantly, the ideas contained within the Workshop Outcomes Report are not final decisions or approved projects. They are a starting point for discussion and consultation. We Need Your Feedback
While workshop participants brought valuable expertise and experience, they do not represent the entire Australian scleroderma community.
That is why we are now seeking feedback from:
- People living with scleroderma
- Family members and carers
- Supporters and advocates
- Health professionals
- Researchers and sector partners
We want to understand:
- Do these priorities reflect your experience?
- What matters most in your scleroderma journey?
- Where are the biggest gaps?
- What should be prioritised?
- Have we missed anything important?
Your feedback will help ensure that future priorities are grounded in real experiences and community needs.
What Happens Next?
Once community consultation is complete, we will:
- Review and analyse all feedback received.
- Identify the priorities that matter most to our community.
- Meet with key stakeholders and partners—including organisations such as Lung Foundation Australia, Australian Scleroderma Interest Group (ASIG), Australian Rheumatology Association (ARA), Arthritis Australia, Pulmonary Hypertension Association Australia, and Connective Tissue Disease Network Australia – to explore opportunities for collaboration, partnership and shared action.
- Report back to the community on what we have learned.
- Use these findings to help develop a new Scleroderma Australia Strategy commencing in 2027.
As a volunteer-led organisation, Scleroderma Australia knows that meaningful change cannot be achieved alone. Many of the opportunities identified will require partnerships, expertise, advocacy, funding and collective effort. Our goal is to work together to create the greatest possible impact for people living with scleroderma across Australia.
Read the Documents
20th Anniversary Workshop Outcomes Report
Join our online consultation sessions
Register for our online consultation sessions to have your say.
Session One: Tuesday September 15 – 1:30 to 3:00 pm
Session Two: Tuesday September 15 – 7:00 to 8:30 pm
Complete the Survey
Your experiences, insights and priorities matter.
Please take a few minutes to complete our community consultation survey.
Together, we can help shape the next chapter of Scleroderma Australia and ensure our future strategy reflects the voices, priorities and aspirations of the community we serve.