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Trusts and Foundations

Inherited retinal dystrophies (IRDs) are the leading cause of blindness in working-age people in the UK, and children as young as eighteen-months are regularly diagnosed.

IRDs cause cells in the retina, the light-sensitive region at the back of the eye, to deteriorate in an unpredictable way, leaving those affected not knowing in what way or at what pace their field of vision will decline.

More than 300 genes have so far been found to cause IRDs, and conditions include retinitis pigmentosa, Stargardt disease, Usher syndrome, Leber congenital amaurosis, and many more. In 2019, the first treatment for one type of IRD became available on the NHS, but there is still so much work to do to ensure everyone affected by inherited sight loss can access viable treatments.

Retina UK is the only UK charity working solely for people affected by inherited sight loss. If helping empower people living with a sight loss condition and driving forward progress in research is important to you, please consider supporting our work.

Your opportunity to make a difference

The support we receive from you could be life-changing to our community; in 2019, we were delighted when the first available treatment for an inherited retinal dystrophy was given the green light for funding on the NHS. With further help from you, we will keep pushing for more treatments. During 2021, your funding allowed us to help 7877 people living with inherited sight loss, their family members or parents, and the healthcare professionals who support them. We also supported nine research projects in the same year. Our Sight Loss Survey from the spring of 2022, with nearly 700 respondents, showed that those who engage with us are less likely to experience loneliness, isolation and depression, compared to those who do not. Please consider helping us so we can continue to make a difference.

In addition to accepting unrestricted donations and grants, we are also seeking funding for specific areas of our work, including:

  • An exciting medical research which focuses on the “spliceosome”, a large ribonucleoprotein (RNP) complex found in the eye, and the PRPF31 gene. Given that faulty spliceosome genes are a relatively common cause of retinitis pigmentosa (RP), the findings of this project should be applicable to the development of treatments for a significant proportion of our community. Find out more about this project,
  • Our range of Information & Support services, which includes our Helpline, Peer Support Groups, Talk and Support service, information events and webinars. These services often require smaller sums to fund than medical research, and they are vitally important for our community.
  • Our genetic testing and counselling project, Unlock Genetics, and Discover Wellbeing, our free resource which helps our community become more aware of their emotional wellbeing, and develop the practical skills and resilience to adapt to highs and lows that life brings.

If you work or volunteer for a Trust or Foundation who may be able to help, please contact our Trusts and Major Gifts Officer on 07841 481423 or by email: fundraising@RetinaUK.org.uk

Dedicated support

Our Trusts and Major Gifts Officer will be pleased to work with you to ensure your charitable aims and reporting requirements are met throughout. We would be pleased to provide regular updates on how you are helping to make a difference to the lives of thousands of people affected by IRDs throughout the UK. You may also receive invitations to events and opportunities to find our more about our work, such as by meeting with members of our Senior Leadership team, or by visiting a lab and seeing medical investigations in action.

Find out annual report and accounts and other charitable publications.

Thank you for caring

We would like to thank all the charitable trusts and foundations who generously support our important work. With your help we can draw closer to our vision: of a world where everyone with inherited sight loss is able to live a fulfilling life.

If you would like further information or an informal discussion, please contact our Trusts and Major Gifts Officer on 07841 481423 or by email: fundraising@RetinaUK.org.uk