New Usher Syndrome Helpline
- Area of Work: Scottish Sensory Hub
- Type: News Item
- Published: 27th February 2026
National Usher Syndrome Helpline launched to provide one-stop support
Usher Syndrome is the largest genetic cause of Deafblindness.
Deafblind Scotland are delighted to announce that they have launched a completely new national helpline service.
The Usher Syndrome Helpline is run jointly with Deafblind UK allowing UK-wide coverage.
This is a first port of call for any enquiries from people living with Usher Syndrome, as well as families and carers. You can call the helpline with questions, requests for support, or if you just need someone to talk to.
To access the Helpline:
- Call 01733 973 500
- Text: 07800 008 088
- Use Contact Scotland BSL
The Helpline is free to call and open Monday to Friday, 10am – 1pm (excluding bank holidays)
For more information, visit Deafblind Scotland’s website at this link.
End of page.
You may also like:
Call for participants with Deafness to take part in a project about incomplete sensory information.
Continue readingAccessible research for people who are Deaf, Deafblind or who have a Visual Impairment.
Continue readingTake part if you are aged 18 years or over with any level of Visual Impairment and any experience of PTSD
Continue readingTake part if you are a CODA over the age of 16 years old.
Continue readingHelp hearing health be recognised as a global priority.
Continue readingFind out what's on and attend accessible events.
Continue readingHelp shape the future of glaucoma care.
Continue readingTake part in a Lived Experience Advisory Group.
Continue readingOur response highlights the needs of people who are Deaf, Deafblind or who have a Visual Impairment.
Continue readingHave your say on the role of Vision Rehabilitation Assistants.
Continue readingSocial support group for adults with any level of Deafness or tinnitus.
Continue readingComplete this consultation if you access optometry services, support people to access eye care services, or are an eye care professional.
Continue readingFirst FIFA tournament to have sign language interpretation broadcasts for all matches.
Continue readingNew guidance supports Audiology services to design and develop clinical peer review schemes to support quality assurance.
Continue readingRegister for this paid Advisory Panel opportunity
Continue readingTake a short survey to share your experiences
Continue readingLearn about this new way NDCS are supporting families.
Continue readingShare your experiences of accessing and using NHS Lothian services by survey or focus group.
Continue readingNew appointments for Màiri McAllan, Alison Thewliss, Maree Todd and Simita Kumar.
Continue readingSign up to participate in this co-design study
Continue readingImproved voting accessibility for people with Visual Impairment
Continue readingReport calls on the UK Government to ensure Access to Work is fully accessible .
Continue readingHelp shape the new guidelines
Continue readingHelp future technology become more accessible
Continue readingThe ALLIANCE has produced a report for the Scottish Parliament's Cross-party Group on Deafness.
Continue reading