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Usher Kids UK

05 September 2017

We've been asked to share information about a new organisation which is being set up, called Usher Kids UK.

It's aim is to support, inform, connect and advocate for children with Usher syndrome and their families.

It has been created by the Mum of a young girl with Usher syndrome, who has been an RPFB member ever since her daughter was diagnosed back in 2011. At that time she and her family found themselves with lots of new questions and concerns, but without any dedicated support network to turn to.

For those who haven't heard of Usher syndrome, it is a rare genetic condition which affects hearing, vision, and in some cases, balance. Because Usher syndrome is so rare, most people have never heard of the condition until they receive the diagnosis. Children are now often diagnosed at a very young age, and yet little support exists to meet the unique challenges they face. It often is hard to find other families and professionals who have experience of the condition, and yet getting support from others can really help make the path ahead easier.

It is hoped that Usher Kids UK can help point newly diagnosed families in the right direction to find answers to the questions they may have, and help them build confidence in the path ahead for their child.

Usher Kids UK ( will go live on Saturday 16th September (the third International Usher Syndrome Awareness Day), and will provide information tailored to the needs of newly diagnosed families, as well as those living with the condition.

The website contains cribsheets on a variety of topics (e.g. Education, Mobility etc.), written by experts in their fields who have direct experience of working with children with Usher syndrome and their families. These new resources are designed to give newly diagnosed families access to tailored and useful information in one place.

Real-life stories will provide insight into the experiences of other families and individuals living with the condition. Parents can also join the Usher Kids UK mailing list, enabling them to receive updates and news specific to Usher syndrome, and also to connect with other families, giving parents and children a chance of creating their own network of support. An Usher Kids UK Facebook page will also go live, enabling new information to be shared, and to listen to the needs of families, and ensure Usher Kids UK responds in meeting these.

If you're interested in finding out more please go to or email

Alternatively you can search on social media using /usherkidsuk (Facebook) and @usherkidsuk (Twitter)

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