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 has a genetic cause. Yet despite strong evidence...
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 research, health and community organisations, we...
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 mean sitting in appointments explaining a condition...
New Publication – Early Support for Children with Usher Syndrome
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...
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 of navigating vision loss, profound deafness, and...
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 Children with Usher Syndrome in Australia.” This...
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