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Achromatopsia is a rare hereditary vision disorder affecting approximately 1 in 30,000 newborn babies.

Leber Congenital Amaurosis (LCA) is a rare genetic eye disease that appears at birth or in the first few months of life.

Charles Bonnet syndrome (CBS) causes people who have lost a lot of sight to see things that aren’t real (hallucinations).

A recording of the Retina UK Professionals' Conference on 27 September 2024. The Conference was held at the Pendulum Hotel in Manchester and online.

• Conference
• Audio
• Video

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.

• Look Forward
• Audio
• Written

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

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

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.

With your challenge, you’ll help support people affected by inherited sight loss to lead better lives today and accelerate the search for treatments for the future.