Information hub

Learn more about Usher syndrome, and the tools and strategies which children, young people and their families living with Usher syndrome find helpful.

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About Usher Syndrome

Usher syndrome is a rare genetic condition which causes;

  • Hearing loss
  • Progressive vision loss
  • In some cases, difficulties with balance (vestibular dysfunction)

There are up to 1,000 children and young people aged 0-25yrs living with Usher Syndrome in the UK. So whilst it may be rare, you are definitely not alone.

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Usher Syndrome - what you need to know

New diagnosis of Usher Syndrome?

We know that a new diagnosis can generate lots of questions. Check out our information pack which helps you learn more about the next steps after diagnosis.

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Find out how to ensure that children and young people living with Usher syndrome can access the same opportunities in education as their peers.

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