“Deafblind Scotland are undertaking research to better understand both the incidence of Usher Syndrome and the needs of children and families with a diagnosis of Usher Syndrome in Scotland.
As you are no doubt aware, 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 1:200,000. Until relatively recently, diagnosis was often made quite late in a person’s life, often being discovered as vision problems appeared in hard of hearing children. However, with genetic testing early diagnosis in childhood is now possible.
What we would like to do:
We would like to improve our knowledge of the incidence of and the pathways leading to diagnosis of Usher Syndrome in children and young people across Scotland. The ultimate aim of this is to allow us to support children, families and Clinicians. We would love to be able to work with children and families to develop better support, connections and resources.
How you can help us:
We would greatly appreciate if you could spare a few minutes to answer a short set of on-line survey questions that can be found here:
https://www.surveymonkey.com/r/VTJR8C7
The survey will remain live until 31 October 2025.
If you would like further information or would like to have a chat about the project, please contact:
Andrena McMenemy
Project Development Leader, Deafblind Scotland
Email: [email protected]“
