Please share your experiences and views with us

Retina UK has launched a major survey to help ensure the charity’s future plans are rooted in the real-life experiences, views and aspirations of people in the UK living with inherited sight loss. Retina UK Chief Executive Tina Houlihan said: “We want to be confident we are responding to our community’s needs and that we …

Inaugural North West Family Fun & Information Day

Retina UK joined forces with Henshaws; Royal Society for Blind Children and St Vincent’s School for the Blind to hold a family event in Liverpool on Sunday 10 March. Despite the horizontal sleet and snow, this free event saw over 50 people from across the North West turn up to enjoy the day. Children had …

Retina UK Challenge Series

The Retina UK Challenge Series is a brand new way to approach your 2019 fundraising with different activities to get involved in throughout the year. With a range of activities available to take part in there’s something for everyone. You can take part in one, a few or all of the challenges, on your own …

Retina UK welcomes London Marathon’s guide runner policy U-turn

Retina UK has welcomed the news that guide runners will be fully recognised for their achievements at this year’s London Marathon after a change of heart by the event’s organisers. We, and other charities, had expressed our concern and disappointment at the news that guide runners would not receive medals or finisher T-shirts when they …

New developments in the search for treatments for Stargardt disease

Researchers funded by Retina UK have contributed to the early development of potential new treatments for Stargardt disease, with their findings recently published in the journal Genetics in Medicine. Stargardt disease principally affects central vision, with onset usually occurring during adolescence or young adulthood, and is frequently caused by errors in a gene known as …

Retina UK launches new Tandem Cycling Event

Retina UK has launched a brand new event for 2019. From 11th-13th October, Retina UK supporters will come together to cycle 100 miles over two days along Hadrian's Cycleway. Supported by paralympic cyclist Steve Bate, the event promises to be a fantastic experience, a great challenge, and a chance to meet new people and make …

Promising interim results for trial of potential new treatment for LCA10

Highly promising interim results from an early phase clinical trial of a potential new treatment for Leber’s congenital amaurosis 10 (LCA10), caused by mutations in the CEP290 gene, have been published in the prestigious journal Nature Medicine. Back in September, we reported on the initial announcement of this encouraging news from the phase 1/2 trial …

“First-in-class” treatment for vision loss in Usher syndrome takes a step towards clinical testing

A potentially transformative new treatment for vision loss in Usher syndrome type 2 has been given the go-ahead for initial clinical testing in a small number of adults living with the condition. Dutch biotechnology company ProQR Therapeutics announced this week that the U.S. Food and Drug Administration has approved its Investigational New Drug (IND) application …

Retina UK Ambassasor wins Venus Award for Inspirational Woman of the Year

Award winning business woman, entrepreneur and Retina UK ambassador Seema Flower recently won the award for the London 2018 Venus Award Inspirational Woman of the Year. At a ceremony that took place at the Waldorf Hilton, she received the award in recognition of her hard work and achievements over the years in inspiring others and …

First gene editing treatment moves towards clinical trials

The US Food & Drug Administration (FDA) has given the go-ahead for clinical testing of what could be the first gene editing treatment to be used in inherited eye disease. The new treatment, known as EDIT-101, has been developed by US-based pharmaceutical company Editas Medicine and aims to use the relatively new gene editing technique …

Gene therapy for RPE65 gene approved for use in EU

The gene therapy Luxturna has won European regulatory approval for the treatment of inherited retinal dystrophy caused by mutations in the RPE65 gene. This milestone decision was made by the European Medicines Agency (EMA) on Thursday, 22 November. Luxturna is the first and only gene therapy available in Europe to treat inherited retinal disease. It …

Ophthalmology clinical research activity on the increase in the UK

Ophthalmology research in the NHS has grown and become more accessible to patients over the last eight years, according to a newly published report in the journal Eye. This is encouraging news for Retina UK as we work towards our aim of anyone living with inherited retinal disease being able to take part in research …