Search

You can download the last three years’ Trustees’ Annual Report & Accounts. They are also available on the Charity Commission website.

• Annual Report
• Written

During our 50th anniversary year, take to the skies with an epic spring skydive for Retina UK!

• Extreme Challenges
• United Kingdom

Refsum syndrome is an inherited metabolic condition, associated with elevated phytanic acid plasma levels, which impacts many body systems.

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.

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

We carried out our first Sight Loss Survey in 2019 and used what we learned to improve our support. It was repeated in 2022 and in 2025. These are the findings.

• Audio
• Written

WE HAVE REACHED OUR TARGET! Thank you everyone for your incredible support! 

Do you want to win up to £25,000 and feel good about supporting people with inherited progressive sight loss?! 50+ Retina UK supporters have won a cash prize so far.