
Rare syndromes
These very rare syndromes (NARP, Bassen-Kornweig, PXE, Norrie) affect the eyes as well as other parts of the body.
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These very rare syndromes (NARP, Bassen-Kornweig, PXE, Norrie) affect the eyes as well as other parts of the body.
Charles Bonnet syndrome (CBS) causes people who have lost a lot of sight to see things that aren’t real (hallucinations).
Alstrom syndrome is an inherited condition which affects many body systems.
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Familial Exudative Vitreoretinopathy (FEVR) is an inherited disorder that causes progressive vision loss.
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Leber Congenital Amaurosis (LCA) is a rare genetic eye disease that appears at birth or in the first few months of life.
Pattern dystrophy is an umbrella term for a group of retinal conditions. It is characterized by various patterns of pigment deposition within the macula.
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.