Search results
Explore the value of volunteering with the Retina UK team, listen as they share their thoughts on volunteering and the benefits it’s brought them. From raising their self esteem and confidence, to securing employment.
Simon talks about his experience of genetic testing and counselling.
Genetic counsellors are specially trained healthcare professionals with extensive scientific knowledge who spend time talking to families living with inherited conditions.
Genes exist inside all the cells that make up your body. They contain genetic code (DNA) and provide instructions for constructing proteins, which are the building blocks of our bodies and perform a huge variety of roles.
We’re all still buzzing from our recent conferences. We do hope you enjoyed them as much as we did. If you weren’t able to join us, then you can watch or listen to the recordings on our website.
Many inherited sight loss conditions occur when cells in the retina, which is the light-sensitive region at the back of the eye, deteriorate in an unpredictable way. These conditions are often referred to as inherited retinal dystrophies.
Catch up on our BBC Lifeline Appeal from November 2025.
The eye is a very complex organ. It has a lens at the front which focuses light on to a light sensitive tissue that lines the inside of the back of the eye – this tissue is called the retina.
The aim of these pages 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.
Making yourself aware of the what you are entitled to, and understanding the diagnosis pathway for inherited sight loss, will put you in a stronger position to seek better support.
