Scleroderma Australia

Scleroderma Australia Australia's national voice for scleroderma. We raise awareness, fund research, and walk alongside the people and families living with this condition.

You are not alone here.

Your experience matters. Have your say today!If you live with pulmonary fibrosis or scleroderma-associated interstitial ...
31/08/2026

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.

27/08/2026

MARK YOUR CALENDARS for our September in-person and online support group meetings!

Come join us for support, friendship & information!

New attendees are always welcome!🌻

For more information, check out our website!

27/08/2026

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 ...
27/08/2026

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.

26/08/2026

We’re thrilled to congratulate Amanda Lj, our Chair of the Board at Scleroderma Australia, on receiving the 2026 Maureen Sauvé Inspiration Award from the Scleroderma Patient-centred Intervention Network (SPIN)!🎉

Although Amanda couldn’t be in Ottawa for the ceremony, SPIN recognised her meaningful contribution to the scleroderma community - bringing together lived experience, patient advocacy and disability inclusion to help drive positive change.

Through her involvement with SPIN’s Steering Committee and advisory teams, Amanda continues to help ensure the voices and experiences of people living with scleroderma are reflected in research, support and care.

As Amanda shared, while her name is on the award, this recognition also reflects the incredible collaboration between people with lived experience, researchers, clinicians, advocates, volunteers, and board members across Australia and around the world.

We were also delighted to see Dr Brett Thombs from SPIN Canada present Amanda’s trophy on her behalf. 🏆

Congratulations again, Amanda! We are all so incredibly proud of you, your leadership and the difference you continue to make for the scleroderma community. 💛

A strong community grows when people come together, each making a contribution that helps something bigger flourish.The ...
24/08/2026

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

20/08/2026

🌻 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 Jul...
20/08/2026

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.

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