Support for people with Usher syndrome

If you or someone in your family has Usher syndrome, there are lots of ways we can help. Our specialist Usher team can help you to understand the condition and what it means for you, as well as give practical advice about benefits, employment opportunities – and much more! We are here to support you whatever your age, whatever stage of your Usher journey you are on, and whatever type of Usher syndrome you have.

Our specialist Usher team can help you and your family with:

  • Understanding your diagnosis and what it means to you
  • Learning different ways to communicate
  • Accessing education, training and health and social services
  • Advice about employment and benefits
  • Understanding accessible technology
  • Accessing social opportunities and and online support groups

You can also access our wide range of specialist practical and emotional support services, such as counselling, tech support and discounted holidays. Click here or contact our helpline for more information.


Our friendly, accessible helpline is available five days a week to answer any questions you and your family might have.

Call us: 0800 132 320
Text us: 07950 008870
Email us: [email protected]
Text relay: 18001 then 0800 132320
Click here for BSL video relay

Support for carers

We care about carers! If you look after or care for someone who has Usher syndrome, we can help.

Click here to find out more about our support for carers. 


Get in touch to find out more

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Open Hand Magazine

Open Hand is our free, quarterly magazine containing articles and information that are tailored specifically to people with dual sensory loss.

There are very few publications designed for this specific market and so Open Hand gives its readers valuable information that they may not otherwise have known and reminds readers about Deafblind UK’s support services.

Prefer to talk?

Call us on 0800 132320 or text us 07903572885
Monday – Thursday 9.00am – 5.00pm and Fridays 9.00am – 4.00pm

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