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What is Alström syndrome?
Alström syndrome is an ultra-rare genetic condition affecting multiple systems of the body, including the heart, vision, hearing and metabolic health.
Children affected by the condition often face serious medical challenges from infancy, including cardiomyopathy, progressive vision and hearing loss, and complex lifelong health needs.
There is currently no cure.
Ultra-rare
genetic condition
Serious
medical challenges
There is
currently
no cure
Why this matters
Just because Alström syndrome is rare does not mean children and families should be left without support, research pathways or hope for the future.
Around the world, rapid advances in genetics, rare disease research and emerging therapies are transforming what may be possible for children affected by rare conditions.
Alström Syndrome Australia was established to help ensure Australian families are part of that progress.
Our mission
We are building a national organisation focused on accelerating research, strengthening collaboration and improving access to future treatments and better outcomes for children affected by Alström syndrome.
Our vision is a future where every child with Alström syndrome has access to early diagnosis, coordinated care and life-changing therapies supported by a connected and informed community.
Alström Syndrome Australia was established following the diagnosis of Liam, a young Australian child diagnosed with Alström syndrome in infancy after developing severe dilated cardiomyopathy.
His diagnosis highlighted a challenge faced by many families affected by
ultra-rare diseases: low awareness, fragmented support networks and limited opportunities to participate in
the research that could improve future outcomes.
Today, Alström Syndrome Australia is working to build a connected national community, strengthen research partnerships and help ensure Australian children are part of the global search for better treatments and, ultimately, a cure.
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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