Our purpose is to see children and families living with Usher syndrome love their lives.
Our mission is 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
Usher Profile Spotlight – Maggie
Meet Maggie, who shares her daily experience living with Usher Syndrome Type 1C. Maggie’s story gives a rare, personal insight into the challenges...
New Publication – Early Support for Children with Usher Syndrome
We’re proud to share our latest publication in Vision Rehabilitation International: “Beyond Clinical Assessments: Advocating for Early Support for...
Inherited Retinal Disease Patient & Family Engagement Day
We had the privilege of attending the IRD Patient & Family Engagement Day, bringing together people impacted by inherited retinal disease,...
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