Please share your experiences and views with us

Posted on: Monday 18 March 2019

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 invest our limited resources wisely to have the most positive impact for our community.

“That’s why we have designed this survey to ask those who live with inherited sight loss to share your experiences, views and tell us what really matters to you.

“Please do take the time to complete our survey and help shape our future as we strive to achieve our vision of a world where everyone with an inherited sight loss condition is able to live a fulfilling life.

“Your responses will help us understand your satisfaction and take up of information and support services, including those offered by Retina UK, and how we can further improve this. You will also guide us on the role that you would like your charity to play in supporting and representing you.”

The survey will take around 20 minutes to complete and is open until Friday 3 May (extended from 26 April). It is open to all those who live with, or have a child who lives with, an inherited retinal condition.

While we are hoping people will choose to share their details with us it can be completed anonymously.

The survey is available in a number of formats. You can complete it on paper, online or over the phone. To request a copy, or to arrange a phone interview please contact us at or phone 01280 821334.