News & updates

Follow the latest updates from Alström Syndrome Australia, including research developments, fundraising milestones, awareness campaigns and community news.

We are committed to sharing progress transparently as the organisation grows and strengthens connections across Australia and the global rare disease community.

This section will provide updates on research momentum, advocacy efforts, collaborations
and future initiatives.

Public Launch

Tuesday 10 November 2026 | 5:30pm
Turbine Platform, Brisbane Powerhouse

Please join us as we officially launch Alström Syndrome Australia — bringing together families, clinicians, researchers, industry leaders and supporters to connect, share and look towards the future.

We’ll introduce our new Medical & Scientific Advisory Committee, share our vision for better care, research and support, and offer a first look at a new sensory arts experience being developed with Deafblind children at its centre.

Join us for drinks and canapés as we celebrate the beginning of Alström Syndrome Australia and the community and possibilities we hope to build around it.

Children and families are warmly welcome.

RSVP

Be part of the journey

Alström Syndrome Australia is still in its early stages, and there is much to build.

Join our mailing list to receive occasional updates on research, advocacy, events and the work being done to improve the future for people living with Alström syndrome.