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These very rare syndromes (NARP, Bassen-Kornweig, PXE, Norrie) affect the eyes as well as other parts of the body.

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.

Stickler syndrome is a genetic connective tissue disorder.

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.

Gyrate atrophy of the choroid and retina, shortened to gyrate atrophy, is an inherited disorder of protein metabolism characterised by progressive vision loss.

Pattern dystrophy is an umbrella term for a group of retinal conditions. It is characterized by various patterns of pigment deposition within the macula.

Choroideremia is a genetic condition that causes progressive vision loss, mostly in males.

Our new Retina UK online auction is now live! Get bidding to win fantastic prizes and support those living with inherited sight loss.

This edition of Look Forward includes the very latest news about an experimental therapy by Retina UK funded researchers, an article about one of our PhD students, a calendar of events in 2025, the usual research news round-up and lots more. Please take the time to complete our Sight Loss Survey, enclosed with this edition. You can find out more about the Survey.

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Our sight loss survey highlighted that you have a real appetite to get involved in representing the inherited sight loss community through activities like focus groups, surveys and research projects via the Retina UK Lived Experience Panel.