Reflecting, Connecting and Looking Forward

In March, Scleroderma Australia marked a significant milestone — our 20th anniversary — with a national celebration event held at the Pullman Hotel in Sydney. Bringing together people living with scleroderma, families, clinicians, researchers, volunteers and partners from across the country, the day was both a celebration of how far we have come and a powerful opportunity to shape our future.

Honouring Our Journey

The day opened with a Welcome from Chair Amanda Lawrie‑Jones, who reflected on the organisation’s humble beginnings. From a first meeting of state leaders in Canberra in late 2004, Scleroderma Australia was formally incorporated in 2005, and launched the association at the 2026 ARA Conference, establishing, for the first time, a strong national voice for people living with scleroderma.

Over the past 20 years, that voice has grown in strength and influence. What began as volunteer‑led information sharing has become a national organisation supporting research, advocacy, education, awareness campaigns and connection, all grounded in lived experience.

A key moment of the morning was the recognition of our founders and early leaders, with special acknowledgement of inaugural President Jan Elliott, alongside those whose dedication and persistence laid the foundations we continue to build on today.

Learning from the Past, Listening to the Present

A panel discussion featuring past and current Board members and support group leaders explored the evolution of care and community support across Australia. The conversation highlighted why national collaboration has always been essential, and why it remains so today.

The morning also featured the launch of a new Scleroderma Australia video, capturing stories of lived experience and reinforcing the importance of visibility, connection and understanding.

A second expert panel, moderated by Professor Mandana Nikpour, focused on delivering better outcomes through multidisciplinary clinics. We had the privilege of Professor Anna Hoffman-Vold in a pre-recorded video messenger along with leading clinicians, researchers and advocates exploring how coordinated care models can improve diagnosis, treatment and quality of life, while also identifying ongoing gaps in access and consistency across states and regions.

Strong Partnerships, Shared Impact

During the day, we were pleased to announce a new partnership with Lung Foundation Australia, reinforcing our shared commitment to improving respiratory outcomes for people affected by scleroderma. The event itself was made possible thanks to the generous support of Boehringer Ingelheim, whose sponsorship enabled our first national conference-style gathering of this kind.

Partnerships like these reflect a growing recognition that progress happens fastest when the community, clinicians, researchers and organisations work together.

Shaping the Next 20 Years

The afternoon was dedicated to an interactive visioning workshop, inviting participants to help define priorities for the next phase of Scleroderma Australia’s work. Four key themes guided the discussion:

• Early engagement and support
• Diagnosis and referral pathways
• Access to best‑practice multidisciplinary care
• Research and data

Across all discussions, one shared ambition emerged clearly: a consistent, timely and person‑centred approach to diagnosis, care and support for everyone living with scleroderma in Australia.

The ideas and insights gathered will directly inform Scleroderma Australia’s strategic priorities over the coming years.

An Evening of Gratitude

The day concluded with an intimate dinner celebration, providing space to pause, reflect and thank those who continue to make our work possible. Board members, health professionals, partners and long‑standing supporters were acknowledged for their leadership, expertise and generosity.

As we marked this milestone, one thing was clear: people are at the heart of everything we have achieved, and everything still to come.

Looking Ahead

Twenty years on, Scleroderma Australia stands stronger, more connected and more visible than ever before. As we move into our next chapter, we do so with renewed purpose, guided by our community and driven by the shared belief that people living with scleroderma deserve timely diagnosis, quality care, and meaningful support, no matter where they live.

Thank you to everyone who helped make the 20th anniversary event such a meaningful and inspiring occasion. We look forward to shaping the next 20 years together.