Our purpose: To see children and families living with Usher syndrome love their lives.
Our commitment: To empower the Usher community through support, connection and knowledge.
Support UsherKids in Run Melbourne 2026!
Sunday, 19th July 2026
5K, 10K or half marathon
Purchase a limited edition Frank Green drink bottle!
Take it to school, work, or the gym, and carry a piece of the UsherKids community with you wherever you go. Every sip says: “Yes, I’m saving the planet AND supporting an awesome cause. What are you doing with your life?”
UsherKids Australia has Charity and deductible Gift Recipient (DGR) status from The Australian Charities and Not-for-profits Commission (ACNC). All donations over $2 are tax deductible.
About Usher Syndrome
Usher syndrome is a genetic condition characterised by hearing loss or deafness, the progressive loss of vision and in some cases, vestibular dysfunction. The loss of vision is caused by an eye disease called Retinitis Pigmentosa (RP), which affects the light-sensitive area of tissue on the back of the eye (the retina).
About Usher Syndrome
Usher syndrome is a genetic condition characterised by hearing loss or deafness, the progressive loss of vision and in some cases, vestibular dysfunction. The loss of vision is caused by an eye disease called Retinitis Pigmentosa (RP), which affects the light-sensitive area of tissue on the back of the eye (the retina).
Get Support
From inspiring personal Usher stories, to a range of practical resources, our Support section will give you information and guidance on a range of support services available nationally for children with Usher syndrome, as well as some helpful facts about the National Disability Insurance Scheme.
Get Support
From inspiring personal Usher stories, to a range of practical resources, our Support section will give you information and guidance on a range of support services available nationally for children with Usher syndrome, as well as some helpful facts about the National Disability Insurance Scheme.
Latest News
Genomic Testing Access for Hearing Loss Must Catch Up to the Evidence
New publication alert! Congenital hearing loss affects around 1–2 in every 1000 babies born in Australia, and around half of childhood hearing loss...
Better support for children and young people with deaf-blindness
A huge thank you to Guide Dogs Australia for hosting a fantastic think-tank this week at their beautiful Kew campus. Together with partners across...
Rare Disease Day 2026
Today is Rare Disease Day. As a parent of a child with Usher syndrome, today holds deep meaning. Rare can feel incredibly lonely at times. It can...
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