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Deafblind Scotland Usher Kids project – call for professionals to share knowledge of diagnosis pathways

  • Area of Work: Scottish Sensory Hub
  • Type: News Item
  • Published: 28th November 2025

This work aims to better understand both the incidence and needs of children with Usher Syndrome and their families

Usher Syndrome is a rare condition that affects both hearing and vision, and in some cases, balance.

Incidence figures are not known, but estimates suggest approximately 1 in 200,000 people are living with the condition.

Until relatively recently, diagnosis was often made quite late in a person’s life, commonly being discovered when Visual Impairment appeared in children or young people who are Deaf or Hard of Hearing.  However, early diagnosis in childhood is now possible through genetic testing.

Deafblind Scotland want to improve knowledge of the incidence of, and the pathways leading to, diagnosis of Usher Syndrome in children and young people across Scotland. This will enable development of better support, connections and resources for children and their families, and clinicians.

How you can help:

Deafblind Scotland are looking for health and medical professionals to participate in this project. Being appreciative of the time constraints placed on professionals, we are keen to provide the best way possible to gather this information by offering the following options:

  • Contribute via informal interview:  If you have time available, please participate in a one-to-one online or telephone informal interview.
  • Complete our survey: https://www.surveymonkey.com/r/8ZGP5MC
  • Participate in an online multi-agency discussion workshop. 

If you can provide any knowledge on diagnosis pathways for Usher Syndrome, or have any questions about the project, please contact Andrena McMenemy: programmeofficer@dbscotland.org.uk

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