We invite you to the official launch of "My Eye Site", an innovative project funded by UK Research and Innovation, to develop novel technology to allow patients with rare inherited retinal diseases to store their own hospital eye data and take ownership of their eye condition. Rare diseases affect approximately 7% of the population. When diseases are rare it is harder to pool the data necessary to research and tackle the problem. As a result, affected individuals may become frustrated by the lack of information and treatments available for their eye problem. MyEyeSite will explore a new solution: empowering individuals to take ownership of their own hospital eye data, using technology, and have the ability to share it with others, in order to better manage their eye condition. Our unique insight is to start, here, with you, a highly motivated community of people who have been affected by inherited retinal disease, and to support you in co-designing a new, accessible app technology. Please help us to engage individuals in your community to share their unique insights with us and co-design this new technology.