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Retina UK is the only UK聽charity solely dedicated to supporting people affected by inherited sight loss.

Approximately 25,000 people in the UK live with these rare genetic conditions which cause progressive sight loss and often lead to blindness. Examples include retinitis pigmentosa (RP), Stargardt disease, Usher syndrome, Leber congenital amaurosis (LCA) and many more.

Diagnosis can be deeply traumatic and people living with sight loss often experience isolation, depression and anxiety. These findings were reflected in the results of the Retina UK Sight Loss Survey in 2025. The charity ensures those affected by inherited sight loss need not face the future alone.

Retina UK provide opportunities to feel less alone through their聽information and supportservices, enabling those affected to lead better lives today. Services include a Helpline (0300 111 4000), website, conferences and regular newsletters. Their peer support group network offers a chance to make connections via regular meetings online and in-person. They are a welcoming, safe and friendly place for people to share experiences and form friendships. They are supported by wonderful volunteers, who share their personal experience of inherited sight loss to make a difference for others.

Just 1.3% of national research in the UK is allocated to ophthalmology. This is equivalent to just 0.8% of the annual NHS cost and just 0.1% of the total UK economic cost of vision problems*. Retina UK has been one of the leading funders of聽vital research聽into the causes of and treatments for these life-changing conditions since the 1970s, investing more than 拢18.5 million.聽

Maria is 59 and lives in Kent. Both her and her son Jacob are both living with retinitis pigmentosa (RP).聽

They were first introduced to Retina UK in 2024 and are members of the London and South East peer support group. For Jacob, meeting people his own age living with RP was particularly useful. Maria has also found the peer support groups incredibly beneficial as a parent. Making connections with people who truly understand what you are going through is vital. They both feel part of a community now and know there is nothing they can鈥檛 ask.聽聽

Ryan is 24 and lives in Kirkconnell. He was diagnosed with rod-cone dystrophy at the age of seven and has a family history of inherited sight loss. Ryan works as a聽employability maintainer and enjoys martial arts in his spare time.聽

He said 鈥淚 live in a fairly isolated location and hadn鈥檛 really spoken to anyone else with my condition before. Following a conversation with Retina UK, I really feel that I鈥檝e now found my people. By volunteering for the charity, I can support other young people and show them that sight loss is not a barrier to success.鈥�

At only 24, he is excited to hear about the developments and breakthrough in medical research that have positive effects on those living with inherited sight loss. This gives Ryan, and lots of other people real hope that one day, there will be a cure.聽

Keith is 78 and is living with retinitis pigmentosa (RP). He has been a supporter of the charity for over 30 years!聽

At the age of 46 Keith lost his job as a maths teacher because of his deteriorating eyesight. Keith phoned the Retina UK helpline and was truly amazed by the support he received. It helped him understand that he was not alone and there were other people with the same condition living life to the full.聽

Inspired by his call with the helpline, Keith now volunteers on the helpline himself. He聽provides information, support and guidance to newly diagnosed individuals and to those whose condition has deteriorated, necessitating a modification to employment or lifestyle.