National Usher Syndrome Helpline Launched
6 hours ago
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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 created in response to demand for specialist, condition-specific support for people living with the combined impact of sight and hearing loss.
The helpline will operate Monday to Friday, 10am–1pm (excluding bank holidays) and will be available in both English and British Sign Language (BSL). The phone line is free to call and will act as a first point of contact for anyone affected by Usher syndrome — whether they have questions, need information and guidance, or simply want to talk to someone who understands.
The service is delivered through a new partnership between Deafblind UK and Deafblind Scotland, and is supported by a network of specialist partner charities and organisations with expertise in Usher Syndrome as well as focusses such as sensory loss, research, genetics, young people, audiology, ophthalmology and disability support. This collaborative model ensures callers can be connected quickly to the right advice, services and community support across the UK.
The helpline will provide support for people at any stage of their Usher journey, across all types of Usher syndrome, and at any age — from diagnosis through to later-life support.
Nikki Morris CBE, Chief Executive of Deafblind UK, said: “Too many people affected by Usher syndrome are left navigating complex systems of health, social care and support alone. This helpline creates a clear, trusted first point of contact where people can get accurate information, emotional support and practical guidance in one place.
“We are proud to launch this service in partnership with Deafblind Scotland. By combining our expertise, networks and lived-experience knowledge, we are creating a service that is truly specialist. We hope it becomes a vital part of the support infrastructure for people living with this complex condition.”
Isabella Goldie, Chief Executive of Deafblind Scotland, said: “This partnership represents a major step forward in how we support people with Usher syndrome across the UK.
“We have heard that those with Usher Syndrome can often fall through the cracks due to gaps between services (often those focussing only on sight or hearing loss) – or simply not knowing quite where to turn for the type of help they might need. This helpline recognises the unique nature of dual sensory loss and provides a dedicated space where people can be understood, supported and empowered.”
Usher syndrome is the most common cause of congenital deafblindness, combining hearing loss with progressive sight loss, often leading to isolation, mental health challenges and barriers to education, employment and independent living. The new helpline aims to reduce these barriers by improving access to information, emotional support and specialist pathways.
Call: 01733 973 500
Text: 07800 008 088
Or use ContactScotland
Free to call
Open Monday to Friday, 10am– 1pm (excluding bank holidays)
Available in English and British Sign Language (BSL)
Managed by Deafblind UK and Deafblind Scotland
Open to people with Usher syndrome, family members, carers, and professionals seeking advice or signposting.
