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Knowledge-base, Bardet-biedl syndrome

Bardet-Biedl syndrome (BBS)

Bardet-Biedl syndrome (BBS) is an inherited condition which impacts many parts of the body including the retina.

A view of a group of people seated all facing to the left of the image. The focus is on a lady holding a microphone. She has long dark hair

Joining the research effort

Many research studies could not take place without the participation of people living with inherited sight loss.

Two Retina UK runners celebrating after finishing the TCS London Marathon.

Take on a challenge

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.

Retina UK Sight Loss Survey 2025 Findings from our survey of over 600 people living with inherited sight loss. June 2025

Every experience counts: Insights from our sight loss survey

A huge thank you to everyone who completed our 2025 sight loss survey. This year we received over 600 responses. It follows similar surveys in 2019 and 2022 which led directly to the introduction of our Unlock Genetics and Discover Wellbeing resources, as well as shaping our work with the professional community who support people with inherited sight loss.