Scleroderma Australia

Your experience matters. Have your say today!

If you live with pulmonary fibrosis or scleroderma-associated interstitial lung disease (SSc-ILD), you have an opportunity to share your lived experience as part of an important Pharmaceutical Benefits Advisory Committee (PBAC) consultation.

The PBAC is considering a potential new treatment option for pulmonary fibrosis and is seeking input from people affected by the condition to better understand its impact on daily life, wellbeing, independence and treatment needs.

Your lived experience can help decision-makers understand the real-world impact of these conditions.

There are several ways you can contribute, including using Patient Input Buddy, an AI-assisted online platform that can help you prepare your submission by guiding you through questions about your experience and helping you draft your response in your own words.

You can also submit your input directly to the PBAC or contribute to Scleroderma Australia’s submission.

👉 Visit www.patientinput.com.au to learn more and have your say.

Submissions close 16 September 2026.

Swipe through the carousel to learn more about the consultation and how you can participate.

Has scleroderma inspired you to try something new? We'd love to hear about it! 👇

Thank you for sharing your story!🌻

To everyone who took the time to complete our community specialist care survey, thank you! Your experiences and insights are helping to build a clearer picture of the challenges people with scleroderma face when accessing specialist care, including cost, availability, and coordination of care.

With over 80 responses received, the feedback is now being analysed and will help inform Scleroderma Australia’s submission to the Parliamentary Inquiry into Access to and Affordability of Medical Specialists in Australia.

We’ll keep you updated as the Inquiry progresses.

Follow the progress of the Parliamentary Inquiry and read Scleroderma Australia’s submission once it is released.

A strong community grows when people come together, each making a contribution that helps something bigger flourish.

The Sunflower Circle is Scleroderma Australia's new monthly giving program, inspired by the sunflower itself. Each supporter represents a petal, and together those petals create something strong, vibrant and sustainable. Monthly donations, no matter the size, help provide a reliable source of funding for research, advocacy, awareness, nursing services and community support.

For many people affected by scleroderma, access to information, connection and support can make a real difference. By joining the Sunflower Circle, you're helping ensure these services can continue to grow and reach more people across Australia.

Be a Petal. Build the Sunflower. Join the Sunflower Circle today and help create lasting change for people with scleroderma. 🌻

Become a monthly giver and join the Sunflower Circle.
https://www.mycause.com.au/page/401773/sunflower-circle-monthly-giving

🌻 Help shape the future of Scleroderma Australia! Have you completed our community survey yet? 👇

Research is changing what we know about scleroderma - and the skin is helping lead the way!

At Scleroderma Victoria’s July Virtual Education Session, Associate Professor Amanda Saracino shared the latest advances in Australian skin-focused scleroderma research and how they’re helping shape the future of diagnosis, monitoring and personalised care.

From the new SMARD Registry and dedicated skin biobank to innovative technologies like artificial intelligence (AI) and spatial transcriptomics, researchers are uncovering new ways to understand how scleroderma affects each person differently.

Every person who takes part in research helps build knowledge, improve care and bring us closer to earlier diagnosis, better treatments and better outcomes for the scleroderma community.

Check out the blog post to learn more about how Australian researchers are transforming the future of scleroderma care through skin-focused research. Link in the comments.