This new paper provides a meaningful and informative resource on the psychosocial literature on Usher Syndrome. Building on existing reviews, it focuses on key themes—such as emotional wellbeing, identity, social support, and future planning—and what they mean for real‑world support and services, drawing on a wide range of research and lived experience. Taking a psychosocial perspective, this overview considers Usher Syndrome holistically across the life span. With this focus

National Usher Syndrome Helpline launched to provide one-stop support for people with Usher Syndrome (largest genetic cause of deafblindness) Deafblind UK and Deafblind Scotland have announced the launch of a new Usher Syndrome Helpline, a dedicated national support service for people living with Usher syndrome and for families, carers and professionals supporting them. Launched by the charity partnerhip the free helpline is the first of its kind in the UK and has been create

Our friends at The Molly Watt Trust set up an interactive map to connect those living with Usher Syndrome. It was born out of a need for connection. In the 17 years of our involvement with Usher Syndrome there has never been a real time map of our community! ‘Usher is rare was always the line!’ The map continues to grow as more people living with Usher place themselves on the map!