A new helpline has been launched to provide one-stop support for people with Usher syndrome (the most common genetic cause of deafblindness). The helpline is delivered through a new charity partnership between Deafblind UK and Deafblind Scotland, and will be a dedicated support service for people living with Usher syndrome and for families, carers and professionals supporting them. 
Launched in February, 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.
Operating Monday to Friday mornings, the helpline 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 will be supported by links with other specialist charities and organisations, with callers signposted according to their needs and locations.
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. 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. 
“This partnership represents a major step forward in how we support people with Usher syndrome across the UK", says Isabella Goldie, chief executive of Deafblind Scotland.
“We have heard that those with Usher syndrome can often fall through the cracks due to gaps between services (often those focusing 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.”
