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:
9th of October 2025
Retina UK - National Peer Support Group Meeting (online)
Guest speaker, Stuart Colville from The Wise Group's Energy Advice Service. For more information and to book a place, click the link provided.Hosted by - Retina UK
16th of October 2025
Retina UK Webinar - 'Getting active: sport and sight loss with British Blind Sport'
The event is an opportunity to learn more about about how sport and physical activity can play a powerful role in boosting health, confidence and wellbeing for people living with sight loss. To find out more and book a place, click the link provided.Hosted by - Retina UK