Scleroderma Australia
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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.
Just over one week left to have your say on pulmonary fibrosis medicines access. Submissions close 16 September 2026.
If you or a loved one live with pulmonary fibrosis, a condition where the lungs gradually stiffen and breathing becomes difficult, a government committee wants to hear from you. They're deciding whether a potential new treatment option should be funded through the Pharmaceutical Benefits Scheme (PBS), and your experience can help shape that decision.
Not sure where to start? A tool called Patient Input Buddy makes it easy. It guides you through a short, natural conversation about your experience, at your own pace, and helps turn what you share into clear input you can send straight to the PBAC. You can stop and pick it back up any time, and everything stays private and secure.
There hasn't been a new pulmonary fibrosis medicine added to the PBS in almost a decade. You don't need medical language, your experience is what matters.
Visit patientinput.com.au before 16 September 2026 to have your say.
05/09/2026
Happy Father’s Day to all the amazing dads and father figures! 💛
Today, we celebrate the love, strength and support you give every day.
A special shoutout to the dads and father figures caring for children or loved ones living with scleroderma. Your compassion, resilience and unwavering support make a world of difference. You truly are everyday heroes.
Pain isn’t always visible.
September is International Pain Awareness Month - a time to recognise the many people living with pain that others may not see.
For people living with scleroderma, pain can be part of everyday life. It can affect the hands, joints, muscles, digestive system and more. Sometimes, the person experiencing it may look completely fine on the outside, while managing significant pain behind the scenes.
Pain can be exhausting, difficult to explain and often misunderstood.
Just because you can’t see someone’s pain doesn’t mean it isn’t real.
This month, let’s listen, learn and show greater understanding and compassion for those living with chronic pain - including people living with scleroderma.
We want to hear from you! Have you registered for the Scleroderma Australia Strategy Development 2027–2032 Online Consultation?👇
03/09/2026
As part of our 20th Anniversary, we’re sharing two important resources that capture where Scleroderma Australia has come from - and explore where we could go next!
📰 20th Anniversary Newsletter - LOOKING BACK - Celebrate the people, milestones and achievements that have shaped 20 years of connection, advocacy, support and community impact.
📋 20th Anniversary Workshop Outcomes - LOOKING AHEAD - Discover the key challenges, themes, priorities and ideas identified during our 20th Anniversary workshops, including opportunities around early engagement, diagnosis and referral, multidisciplinary care, and research and data.
The workshops were facilitated with support from Boehringer Ingelheim (BI).
Together, these resources provide an important look at 20 years of Scleroderma Australia and the ideas that could help shape our future.
We encourage our community to take the time to explore both documents, share your thoughts and join the conversation as we develop our Strategic Plan 2027–2032.
Read, download and discover what comes next:
👉 www.sclerodermaaustralia.org.au/scleroderma-20th-anniversary/
02/09/2026
Join us and help shape our future!
Scleroderma Australia is developing our 2027–2032 Strategy, and we want you to be part of the conversation. 🌻
Following our 20th Anniversary workshops, we’ve identified key themes, priorities and opportunities - and now we’re inviting our community to help explore what these could mean for the future of scleroderma support and advocacy in Australia.
Join us online to:
- Discover what emerged from our workshops
- Connect with people impacted by scleroderma from across the country
- Share your ideas and contribute to shaping our future direction
📅WHEN: Tuesday 15 September 2026
🖥️WHERE: Google Meet
⏰CHOOSE from 1:30–3:00 PM or 7:00–8:30 PM
Everyone is welcome to contribute.
Join us and be part of shaping Scleroderma Australia’s next five years!
Register for our online consultation sessions to have your say. Links are in the comment section.
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.
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!
Has scleroderma inspired you to try something new? We'd love to hear about it! 👇
Click here to claim your Sponsored Listing.
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East Melbourne, VIC