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 $10 ticket could help support someone living with scleroderma!Play For Purpose Raffle 33 gives you the chance to wi...
23/09/2026

Your $10 ticket could help support someone living with scleroderma!

Play For Purpose Raffle 33 gives you the chance to win an incredible $350,000 First Prize Pack, including a Lexus RX 450h+, $175,000 in gold bullion and more than $36,000 in shopping vouchers.

Tickets are just $10, and 50% of every ticket purchased through Scleroderma Australia’s Play For Purpose page goes directly towards supporting our community.

Your support helps fund scleroderma nurses, helping people living with scleroderma access specialist care, expert advice and support across Australia.

📅 Ticket sales close: Thursday 8 October 2026, 8pm AEDT
🏆 Drawn: Monday 12 October 2026, 10am AEDT

Please make sure you purchase your tickets through the Scleroderma Australia page so your support goes directly to our community.

Buy your tickets today and support Scleroderma Australia!
https://www.playforpurpose.com.au/scleroderma-australia

How long did it take you to get a scleroderma diagnosis?For many people living with scleroderma, getting the right diagn...
21/09/2026

How long did it take you to get a scleroderma diagnosis?

For many people living with scleroderma, getting the right diagnosis can take far too long.

At our 20th Anniversary Workshop, our community highlighted some of the barriers they’ve experienced - from inconsistent awareness of scleroderma among GPs, to unclear referral pathways and limited access to specialists, particularly outside major cities.

These aren’t just individual challenges. They point to a need for clearer, more consistent pathways to diagnosis and specialist care.

💬 We want to hear about your experience. Your story and perspective can help us understand what needs to change and build a clearer path for people living with scleroderma.

👉 Complete our survey and have your say:
https://docs.google.com/forms/d/e/1FAIpQLSek5sS0wle98owaSaaG_5K9oaNPMfrpmEVLy10jALzYDkxk-Q/viewform

Together, we can work towards better pathways and brighter futures for people living with scleroderma.

18/09/2026

A strong community grows when we come together!

Every person who joins the Sunflower Circle is like a petal of the sunflower. On their own, each contribution matters. Together, we can create something stronger and more sustainable for people living with scleroderma.

Monthly gifts, no matter the size, help support research, advocacy, awareness, nursing services and community support across Australia.

By becoming a monthly giver, you’re helping Scleroderma Australia continue to show up for our community and reach more people with the support they need.

🌻 Be a Petal. Build the Sunflower.

Join the Sunflower Circle today and help create lasting change for people living with scleroderma. Link in the comments.

17/09/2026

When your condition is invisible, what helps you feel seen and understood?👇

Today is World ILD Day!Interstitial Lung Disease (ILD) is a broad group of lung conditions that can cause inflammation o...
15/09/2026

Today is World ILD Day!

Interstitial Lung Disease (ILD) is a broad group of lung conditions that can cause inflammation or scarring of the lungs, affecting breathing and lung function.

People living with scleroderma can develop a form of ILD known as systemic sclerosis-associated interstitial lung disease (SSc-ILD), making awareness and support especially important.

Scleroderma Australia is proud to partner with Lung Foundation Australia to provide information, resources and support for people affected by SSc-ILD, including an online peer support community for men living with scleroderma.

Learn more about the peer support community:
https://lungfoundation.com.au/support-and-resources/support-groups/

Access information and resources about ILD, including SSc-ILD: https://lungfoundation.com.au/support-and-resources/resource-hub/?jsf=jet-engine:resource-hub&plain_query=s:Pulmonary%20Fibrosis&tax=resource-lung-disease:196

🔔 FINAL REMINDER: Have Your Say by TomorrowThis Pulmonary Fibrosis Awareness Month, we’re encouraging people living with...
15/09/2026

🔔 FINAL REMINDER: Have Your Say by Tomorrow

This Pulmonary Fibrosis Awareness Month, we’re encouraging people living with pulmonary fibrosis, as well as their carers and families, to share their experiences with the PBAC.

The Pharmaceutical Benefits Advisory Committee (PBAC) wants to better understand the reality of living with this irreversible and progressive lung disease before making its recommendation on whether a potential new medicine should be funded through the Pharmaceutical Benefits Scheme (PBS).

Patient Input Buddy can help you share your story through simple prompts. You can type your responses or use voice-to-text, and the tool helps turn your experiences into a clear submission that you can review, refine and send directly to the PBAC from your own personal email.

Developed by Boehringer Ingelheim in consultation with Scleroderma Australia, Lung Foundation Australia, Patient Voice Initiative and Rare Cancers Australia, Patient Input Buddy makes it easier to share what living with pulmonary fibrosis is really like.

📅 Patient input closes tomorrow, 16 September 2026.

Have your say today: www.patientinput.com.au

Take a few minutes to share your experience before submissions close tomorrow.

REMINDER that our Online Strategy Development Sessions are tomorrow!Scleroderma Australia is developing our 2027–2032 st...
14/09/2026

REMINDER that our Online Strategy Development Sessions are tomorrow!

Scleroderma Australia is developing our 2027–2032 strategy, and we want to hear from you.

Following our 20th Anniversary Workshop, we’re exploring four key areas for the future:

🌱 Early Engagement
🔎 Diagnosis and Referral
🤝 Multidisciplinary Care
🔬 Research and Data

These are a starting point for discussion, not final decisions. Your experiences, ideas and perspectives will help us understand what matters most to our community and where we should focus in the years ahead.

📅 Tuesday, 15 September
🕐 1:30-3:00 pm OR 7:00-8:30 pm AEST
💻 Online via Google Meet

👉 Register for our online strategy development session and have your say in shaping Scleroderma Australia’s next chapter.

Your voice matters. 🌻

JOIN US for Scleroderma Australia's Men’s Online Support Group meeting TONIGHT!WHEN: Monday, 14th September 2026, 7:30 p...
14/09/2026

JOIN US for Scleroderma Australia's Men’s Online Support Group meeting TONIGHT!

WHEN: Monday, 14th September 2026, 7:30 pm AEST (TONIGHT!)
WHERE: Online via Zoom

Lung Foundation Australia is proud to be partnering with Scleroderma Australia to provide an online community for men living with scleroderma. This is a space to listen to each other’s experiences without judgment, share stories, resources, questions, and tips, and encourage each other in managing this condition!

See you there!

10/09/2026

Hear from Amanda Lawrie-Jones, Chair of Scleroderma Australia, as she shares why our Play for Purpose partnership is so important to our community and how your support can help.

When you purchase a Play for Purpose ticket and choose Scleroderma Australia, 50% of your $10 ticket goes directly towards supporting our work.

Your support helps us continue funding specialist scleroderma nurses who provide trusted information, support and connection to people living with scleroderma across Australia.

🎟️ Tickets are just $10!
⏰ Sales close: Thursday 8 October 2026, 8pm AEDT
🏆 Drawn: Monday 12 October 2026, 10am AEDT

Please make sure you purchase your ticket through the Play For Purpose - Scleroderma Australia page (link in the comment👇) so your support goes directly to our community.

Thank you for standing with our scleroderma community.

10/09/2026

20 years behind us, a stronger future ahead! 💛 Share your thoughts and help shape what’s next. Complete the survey today!

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