Now available!!!!! Usher Syndrome – About Us, By Us is a lived-experience resource on Usher Syndrome, covering its types, prevalence, and the realities of parenting, education, work, and aging,...

Now available!!!!! Usher Syndrome – About Us, By Us is a lived-experience resource on Usher Syndrome, covering its types, prevalence, and the realities of parenting, education, work, and aging,...

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...

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 We’re proud to share our latest publication in Vision Rehabilitation International: “Beyond Clinical Assessments: Advocating for...

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...