About Unlock Genetics

The aim of the site is to increase the level of awareness and understanding of genetic testing and genetic counselling among people living with inherited retinal dystrophies, empowering them to make fully informed decisions about their lives, healthcare and family planning.

This website is brought to you by Retina UK. Retina UK is a charity that works for people affected by inherited sight loss conditions including retinitis pigmentosa, Stargardt disease, Usher syndrome, cone-rod dystrophy and choroideremia. It was created in response to our Retina UK Sight Loss Survey in 2019, when 43% of the 1,000 respondents told us they were ‘not aware’ of genetic testing or that they were ‘aware of it but it is not available to me’.

The information on this site is also available in printed and audio format. To request these please email services@retinauk.org.uk or phone 01280 812334.

Thanks to all those who have contributed to the development of this resource, including:


Georgina Hall, Consultant Genetic Counsellor, Manchester Centre for Genomic Medicine.

Expert reviewers

Georgina Hall, Consultant Genetic Counsellor, Manchester Centre for Genomic Medicine; Sian Sperring, Genetic Counsellor, Oxford Eye Hospital; Clare Arnison-Newgass, Ophthalmic Genetic Research Nurse / Clinical Nurse Specialist, Oxford Eye Hospital.

Community reviewers and website testers

Andrew Adams; Joe Rizzo-Naudi; Martin Hills; Pene Welham; Emma Reed; Chloe Joyner, Gill Eastwood; Russell Stephenson; Simon Lakin; Stephen Goulden, Mark Baxter, Neill McBride.

This project was kindly funded by Novartis.