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About us
Alström Syndrome Australia is a newly established, parent-led national not-for-profit organisation focused on accelerating research and improving outcomes for children and families affected by Alström syndrome.
Mission statement
To accelerate research and improve access to emerging therapies for Alström syndrome in Australia, while strengthening connection and ensuring patients are visible within global advancements in care and treatment.
Vision statement
A future where every child with Alström syndrome has access to early diagnosis and life-changing treatments, supported by a connected and informed community.
Our story
Alström Syndrome Australia was established following the diagnosis of several Australian children with Alström syndrome.
Families quickly recognised the need for stronger connection, national advocacy and greater visibility within global research efforts.
While Australian families continue to receive extraordinary clinical care, many still navigate fragmented systems and limited dedicated research pathways for this ultra-rare condition.
The organisation was established to help change that over time.
Why now
Around the world, advances in genetics, rare disease research and emerging therapies are rapidly transforming what may be possible for children affected by rare conditions.
We believe Australian children deserve to be part of that future regardless of how rare their condition may be.
Collaboration
We are committed to building partnerships with clinicians, researchers, hospitals, universities, international organisations and the broader rare disease community.
Meaningful progress will require collaboration, visibility and long-term investment in research and coordinated care.
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.
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