About us

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About Usher Kids UK

Usher Kids UK is a registered charity, founded in 2017 by a parent determined to ensure that families like theirs, with a child diagnosed with Usher syndrome, could access tailored information, support and the chance to connect with other families and experts. From this one family, Usher Kids UK has grown to connect hundreds of families across the UK.

Our mission is to empower children, young people and their families living with Usher syndrome in the UK through the provision of information, support, connections and advocacy.

What we do



We provide information and resources for families and professionals which address the specific challenges of Usher syndrome.



We connect families with emotional and practical support from diagnosis onwards.



We create opportunities to bring together our community of children, young people and families at virtual and in-person events, enabling them to share and learn from each other’s experiences, and access tools, resources and experts that can help them in their journey with Usher syndrome.



We use insights from our community to raise awareness and understanding of the impact and experiences of those living with Usher syndrome across key stakeholder groups (healthcare, research, education and government), increasing their commitment to improve services and address the needs of our community.

Who we are

Our organisation

The day-to-day operations of our charity are carried by our team of staff and volunteers, led by our Chief Executive Officer.

Our board of trustees is responsible for the strategic management of our charity and delivery of our charitable objectives. Our trustee board is comprised of parents of children with Usher syndrome (of different ages / types), and expert professionals who work with our community.

Our community

Our services are available to all families of children and young people aged 0-25yrs living with Usher syndrome in the UK, and the professionals working alongside them.

Our partners

Usher Kids UK is proud to partner with organisations which serve or represent the Usher community in the UK and internationally. Below are some of the organisations we are currently collaborating with.


Our funders

We are thankful to all the individuals and organisations which provide funding that makes our work possible, including the following funders:

Magic Grants

Stay in touch

We send out emails to keep people on our mailing list up to date with events, new resources and other services which we think are relevant to our community.

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