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Inherited retinal dystrophies (IRDs) are the leading cause of blindness in working-age people in the UK, and children as young as eighteen-months are regularly diagnosed.

Autosomal recessive inheritance means that the faulty gene is on an autosome (any chromosome other than the sex chromosomes) and that both copies need to be faulty to cause sight loss

This page explains the different types of genetic tests: diagnostic testing, predictive testing, carrier testing and research testing

Our volunteers are highly valued members of the Retina UK team and their roles are essential to help support and enable people affected by inherited sight loss to live fulfilling lives.

• Impact Report
• Audio
• Written

We want to ensure our current and future activities are relevant and that they respond to your needs. The only way we can be confident of this is to ask about your experiences, views and what matters to you.

• Information Events

Friday 24 April to Saturday 25 April 2026 - In-person - Get Ready to Make Waves! We are pleased to invite you to join our Young Adult community for an adrenaline-fueled day of white-water rafting, lunch and a focus group at Lee Valley White Water Centre!

• Local Peer Support Group

We’re all still buzzing from our recent conferences. We do hope you enjoyed them as much as we did. If you weren’t able to join us, then you can watch or listen to the recordings on our website.

• Look Forward
• Audio
• Written

Including a gift to Retina UK in your Will is an incredibly special way to help our vital work continue into the future.

The BBC World Service has undertaken an investigation of unproven treatments for retinitis pigmentosa (RP) and has produced a documentary film, called Blind Faith, which is available on BBC iPlayer.

• News
• Retinitis pigmentosa