Retina UK Helpline

The Retina UK website will answer some of your queries about inherited sight loss and associated syndromes, but everyone’s circumstances are different and you may have further questions.

The Retina UK Helpline – 0300 111 4000 (new number from 27/4/20) is for people with inherited sight loss, their relatives and anyone who wants to know more about these conditions. You can ask condition-specific questions, seek information about benefits, employment and education or anything else that may be of interest to you. We will be able to answer your question or signpost you to a relevant organisation that can.

The helpline offers confidential support and gives the opportunity to discuss feelings or concerns with a trained volunteer who either lives with, or has a close family member with, inherited sight loss.

The Retina UK Telephone Helpline is open from 09.30 to 21.30 from Monday to Friday. An answering service is in place at other times and messages left from within the UK will be returned as soon as possible. For people calling from outside of the UK, please leave your email address so we can get in touch.

You can also email the Retina UK Helpline at any time at We aim to respond within 48 hours and your email will be treated in the strictest confidence.

The Retina UK Helpline service cannot provide medical diagnoses or counselling, and any information given is intended only as a guide. You should speak to your GP or consultant for any urgent medical queries.

Retina UK is a member of the Telephone Helplines Association and also provides access to LanguageLine for callers where English is their second language.

We also offer a number of online support groups. You can find out more on their website:

Information and advice
Managing a long-term health condition
Additional needs catered for:
Non English speaking friendly
Key words - separate with a comma: sight loss, inherited sight loss, vision