Usher syndrome is a progressive sight and hearing loss condition. Being diganosed 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.
Save the date: 27 February, 12 pm.
"As any parent knows, we’re all winging it all the time and actually what you often do is try and just pitch yourself amongst your peers. When you get a rare diagnosis, you immediately lose your peer group. I had no one that I could say, how did you tell your profoundly deaf child they were going to go blind?"
About the speaker
Chloe Joyner founded Usher Kids UK in 2017, and led the organisation before handing over to a newCEO in 2024. Chloe continues to provide strategic input in her role as Chair of Trustees for the charity.
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- 1,000
- Usher syndrome is thought to affect between 4-17 individuals per 100,000 in the population. We estimate there are approximately 1,000 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
- People directly impacted by sight conditions
- Families impacted by progressive sight conditions
- Anyone who wants to better understand how to support someone emotionally and beyond clinical care
- Researchers in the field
- Anyone beginning a career in eye research
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