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Familial Exudative Vitreoretinopathy (FEVR) is an inherited disorder that causes progressive vision loss.

The content on this site will have answered some of your queries about inherited sight loss and associated syndromes, but everyone’s circumstances are different and you may have further questions.

We are currently funding a range of exciting projects and programmes, all of which aim to enhance our understanding of inherited sight loss, and inform the development of treatments for the estimated two million people affected worldwide.

Please get in touch with us using the method which suits you best. You'll find details of all of the different ways you can contact us on this page.

Doyne honeycomb dystrophy is an inherited disorder which causes progressive sight loss.

We carried out our first Sight Loss Survey in 2019 and used what we learned to improve our support. It was repeated in 2022. These are the findings.

• Audio
• Written

As well as many of the well-known races, we also have exclusive places available in hundreds of local runs. Wherever you live, you can run as part of #TeamRetinaUK this year!

• Running
• Close to home

A recording of the Retina UK Annual Conference on 28 September 2024. The Conference was held at the Pendulum Hotel in Manchester and online.

• Conference
• Audio
• Video

James, who lives with retinitis pigmentosa, is running the TCS London Marathon in April 2025 to raise vital funds for Retina UK.

• Case study - community
• Written

X-linked retinoschisis (XLRS) is an inherited condition that causes early loss of mainly central vision in males.