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.Events associated with this provider:
6th of March 2025
Women's Peer Support Group (online)
The group is a safe, friendly & welcoming place which will give you the opportunity to discuss what’s on your mind from any troubles & struggles in daily life to specific topics. For more information, visit the link provided.Hosted by - Retina UK
20th of March 2025
Retina UK Webinar - Genetic Testing: what can I expect? (online)
An exploration of a community member's experiences of genetic testing with input from a genetic counsellor.Hosted by - Retina UK
17th of April 2025
Retina UK Webinar - Miles for Vision: Behind the Scenes of the London Marathon 2025 (online)
Fundraising manager, James Clarke, talks to some of Retina UK's 2025 London Marathon runners!Hosted by - Retina UK