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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.

Suzanne and Anne

Meet our volunteers: Suzanne and Anne

For people living with inherited retinal conditions, finding others who understand can make a profound difference. In the South-West, volunteers Suzanne and Anne are helping to create those connections – offering support, understanding and a strong sense of community across a wide and largely rural area.

Three ladies sitting together on a sofa. They are all smiling at the camera. The lady in the centre is wearing a Retina UK tshirt.

Meet our volunteers: Annemarie and Kim

Annemarie and Kim share the role of Local Group Facilitator for ‘Bumpers’ in Belfast, Northern Ireland. The group meets monthly and is open to anyone living with sight loss in the Belfast area. They currently have almost 40 members, supported by an incredible team of sighted volunteers.