by Emily Shepard | Mar 16, 2026 | News
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 supporting genomic testing, access remains limited. In this newly...
by Emily Shepard | Mar 5, 2026 | News
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 explored how we can better support children and young people with dual...
by Emily Shepard | Feb 28, 2026 | News
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 most professionals have never seen. It can mean your child being the...
by Emily Shepard | Jan 28, 2026 | News
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 article...
by Emily Shepard | Jan 27, 2026 | News
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 absent balance organs — a “triple threat” that shapes her daily life....
by Emily Shepard | Jan 27, 2026 | News
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 article highlights how advances in genetic testing allow for early...
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