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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.

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Could you take on an adventure of a lifetime for Retina UK and take part in the Sahara Desert Trek in November 2025?

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Cataracts and macular oedema are both associated with inherited sight loss and may respond to treatment.

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Cone-rod dystrophy is less common than rod-cone dystrophy with an incidence of approximately 1 in 80,000.

This very rare condition is associated with a deficiency in the enzyme ornithineaminotransferase.

In Refsum syndrome, visual impairment is accompanied by hearing loss, neurological problems, heart problems, dry or flaky skin, loss of sense of smell, and oddly shaped red blood cells.

People with NARP (Neuropathy, Ataxia and Retinitis Pigmentosa) syndrome have neurological (muscle weakness, epilepsy and memory problems) and balance problems in addition to retinitis pigmentosa.

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

In this condition, retinitis pigmentosa is accompanied by progressive neurological problems, abnormal red blood cells (acanthocytosis) and defective bowel absorption of fat, leading to very low blood levels of cholesterol and absent beta lipoprotein (Abetalipoproteinaemia).