Retina UK
Description: Retina UK is the national charity for families living with inherited retinal dystrophies. They fund research and provide information and support to those affected by inherited sight loss and the professionals who support them. They support anyone with the following visual impairments: Retinitis Pigmentosa (RP), Rod Cone dystrophy, Cone Rod dystrophy, Choroideremia, Leber congenital amaurosis (LCA), Bardet-Biedl syndrome (BBS), Usher syndrome, Stargardt disease.
Weblink: https://retinauk.org.uk/
Tel: 01280 821334
Email: services@retinauk.org.uk
Category: Third/voluntary Sector
Services Provided
UK Care Pathway for RP
An on-line resource giving information about the care of retinitis pigmentosa. There are sections for patients, parents, family & friends, teachers, employers and health professionals.Retina UK Helpline
RP helpline is operated by volunteers all directly affected with a genetic eye disorder, who genuinely understand the issues faced with daily living.Retina UK Talk and Support
For people who prefer a regular call from someone who is affected with inherited sight loss and can offer a listening ear, provide information, hints and tips.Retina UK Peer Support Groups
Retina UK volunteers run a number of Local Groups in towns across the UK. The also run an online group for 'Wrexham and Wales'. These enable people with RP to socialise and support each other as well as raise funds and run events on our behalf.Retina UK Talking Home and Garden peer support group
An interest-focused group is a safe, friendly & welcoming place which will give you the opportunity to share your stories, tips, hints and advice around all things home & garden from DIY & decorating to planting flowers & mowing the lawn. It will meet online, via Zoom, bi-monthly.Retina UK 'Talking' Creative Arts Peer Support Group
This interest-focused group will give you the opportunity to share your stories, tips, hints and advice around all things creative from painting to pottery, sketching to sculpting and every creative talent in between. It will meet online, via Zoom.Retina UK 'Talking' Tech Peer Support Group
A peer support group where you can share your experiences, tips and hints around all things Tech. The meetings take place bi-monthly via Zoom.Genetic Counselling
The aim of genetic counselling is to help individuals and families to understand the condition, make choices, access any appropriate screening or medical treatment, communicate with relatives and find suitable support. Genetic counsellors will often draw a family history, explain relevant inheritance patterns and discuss risks to children. They are also experts at explaining genetic test results.Events associated with this provider:
19th of November 2025
Steps through the Sand: stories from Retina UK's Sahara Trek (online)
The event is an opportunity to hear from the trekkers who took on this once-in-a-lifetime challenge – trekking across the Sahara Desert to raise vital funds and awareness for people affected by inherited sight loss. To find out more and book a place, click the link provided.Hosted by - Retina UK
20th of November 2025
Retina UK ‘Talking’ Tech Peer Support Group Meeting (online)
The group provides a welcoming, safe and friendly opportunity for people to meet up from across the UK to share experiences, tips and information, and meets bi-monthly. This meeting is an opportunity to find out about some useful tech that was showcased at this years London Sight Village. You can find out more and register to attend the session via the link provided.Hosted by - Retina UK
Retina UK ‘Talking’ Tech Peer Support Group Meeting (online)
The group provides a welcoming, safe and friendly opportunity for people to meet up from across the UK to share experiences, tips and information, and meets bi-monthly. This meeting is an opportunity to find out about some useful tech that was showcased at this years London Sight Village. You can find out more and register to attend the session via the link provided.Hosted by - Retina UK
11th of December 2025
Retina UK webinar - Ask the expert with Professor Marcela Votruba
Retina UK is running an 'Ask the expert' session with Professor Marcela Votruba Professor of Opthalmology from Cardiff University. It is an opportunity to find out about the latest research, and you can also submit questions in advance. You can find out more and book a place via the link provided.Hosted by - Retina UK