27/08/2026
We’re asking for your help with something really important.
Recent feedback from funding applications has made it clear that we need to provide stronger and clearer evidence of the Usher syndrome community across the island of Ireland. This is particularly important as we work to secure the funding needed for Usher Syndrome Ireland to continue.
We are asking all those living in Ireland and Northern Ireland with a connection to Usher syndrome to take a few minutes to complete this short form. It may seem like a small thing, but every response really does matter.
If you are a teacher, support worker, healthcare professional, family member, friend, or anyone else who knows someone with Usher syndrome, we would really appreciate it if you could share this form with them or their family.
By taking part, you’ll help us demonstrate how many people with Usher syndrome and their families we support, where people are living across the island of Ireland, and the different types of Usher syndrome and support needs within our community. It will also help us advocate for better services and support for you and your family and demonstrate to pharmaceutical companies and researchers that there is a real community here that could benefit from clinical trials and research opportunities.
We’d would also like to reassure you that your personal information will be kept strictly confidential and stored securely, and it will never be shared with anyone else without your permission.
Thank you. If you have any question, please reach out to us at [email protected]
Form link: https://tinyurl.com/MappingUSH
Image description: Dublin city at dusk, overlooking the River Liffey. The image includes a caption that reads, “We need your help. It’s really urgent.”
