Usher syndrome Awareness Day – Saturday 15th September

Posted on: Friday 14 September 2018

Saturday 15th September is the fourth annual Usher syndrome Awareness Day – an opportunity for individuals, families and organisations around the globe to raise awareness of Usher syndrome, the importance of providing support for those affected and the need for research into potential treatments.

We know that there are many families out there in the UK with children who have been diagnosed with this condition. Many of those children and their families will never have met another person with Usher syndrome. We know that both the diagnosis and the reality of life with Usher syndrome can present lots of challenges and that individuals and families can feel isolated in trying to meet their child’s changing needs. We work in partnership with Usher Kids UK to bring families together, giving parents and children the opportunity to build a network of friends for mutual support. Coming together as a collective also gives the Usher community a louder voice when it comes to advocating for services and pushing for increased funding for medical research into potential treatments.

If you are the parent of a child with an Usher syndrome diagnosis please do get in touch. You can call the office on 01280 821334 or email We will take your details and check that you are happy to be contacted not only by RP Fighting Blindness, but also by Usher Kids UK, so that we can connect you to other families facing similar challenges. We will also be able to share relevant information and updates, and invite you to events which may be of interest (for example, the Usher Kids UK family event – Connect Usher – taking place on Saturday 22nd June 2019 in Birmingham – free places for all families with children living with Usher syndrome). Please contact our friendly team if you would like to know more.

Usher syndrome is a genetic condition characterised by hearing loss or deafness, the progressive loss of vision and in some cases, balance problems. The loss of vision is caused by retinitis pigmentosa (RP), which affects the light sensitive retina at the back of the eye.