Webinars

Empowering children, young people and their families living with Usher syndrome

Usher syndrome is a progressive sight and hearing loss condition. Being diagnosed with this condition raises a lot of questions, which Usher Kids UK may be able to support you with.

In this webinar we're joined by founder of Usher Kids UK, Chloe Joyner. Chloe talks us through the importance of emotional support when someone close to you is diagnosed with a progressive condition.

This webinar took place on Thursday 27 February 2025. A recording of the event is below. 

Watch the recording of the webinar here 

About the speaker

Chloe Joyner founded Usher Kids UK in 2017, and led the organisation before handing over to a new CEO in 2024. Chloe continues to provide strategic input in her role as Chair of Trustees for the charity. 

 

  • 2,000
    Usher syndrome is thought to affect between 4-17 individuals per 100,000 in the population. We estimate there are approximately 2,000 children and young people aged 0-25yrs with Usher syndrome living in the UK.

Who will benefit from this webinar?

The webinar is a unique opportunity to hear from people directly impacted by this condition who can share their insight and experience about living with progressive sight and hearing loss. 

The session will interest

Three young people are huddled together at an Usher Kids UK event. They're wearing safety helmets and harnesses about to take part in a daring activity. They are all looking excited about what's. The image was provided by Usher Kids UK from an event that took place in 2024

"An Usher syndrome diagnosis generates a range of question for families, and often they feel alone in piecing together the answers. Usher Kids UK exists to empower families, by giving them access to tailored information and a community of support and connections."

Chloe Joyner Founder of Usher Kids UK
Bringing isolated families together