In 2019, the very first treatment for one inherited retinal condition became available on the NHS. Now is the time to push forwards and drive progress towards treatments for much larger numbers of people living with genetic conditions that cause progressive and unpredictable loss of sight.
It ran from 12:00 PM, 30 November 2021 to 12:00 PM, 7 December 2021
Registered Charity in England and Wales (1153851)
Inherited retinal conditions cause progressive and unpredictable loss of sight. This is hugely distressing for the individuals and families affected, and can lead to anxiety, depression, social isolation and loss of confidence. In 2019 the very first treatment became available on the NHS. However, only around 90 people in the UK are eligible for this (out of more than 25,000 affected), as it targets one specific gene out of more than 280 identified as causing inherited retinal conditions.
Retina UK has spent 45 years funding the most promising medical research into inherited retinal conditions. We are thrilled that the very first treatment has now become available and is benefitting those who have received it. We believe that now is the time to drive forwards and invest as much as possible into research that will lead to treatments suitable for many more people living with these distressing conditions. Gene therapy, stem cell therapy and drug repurposing all show promise.
The treatment has changed my life in so many ways and given me new confidence. I'm a huge Newcastle United fan, and now I can see the ball move when I watch a match. That might sound like a small thing to some people, but for me, it's amazing beyond words.
The future worries me. We don’t know how Jack and Oliver’s sight loss will progress, or whether our two youngest boys are also affected. This is why the hope that comes from the medical research funded by Retina UK is so important to me and my boys.
A huge thank you to supporters of Retina UK who donate time and money. Their generosity allows me to work on my project and pays for essential lab equipment which is critical to gaining new insights into the development and progression of inherited retinal diseases.
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