Wales Council of the Blind

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.

Events associated with this provider:

24th of April 2025

Retina UK Peer Support Group for parents and carers (online)

Online Peer Support Group for the parents and carers of children with an inherited retinal dystrophy. The meetings provide an opportunity to bring families together, to share experiences, hints, coping strategies, and ideas to help you support your young person. To find out more and book a place, click the link provided.

Hosted by - Retina UK

6th of May 2025

Retina UK Men's peer support group (online)

The meeting is a safe, friendly & welcoming place which will give guys with sight loss the opportunity to all sit around a virtual table and discuss what’s on their minds. For more information and to book a place, click the link provided.

Hosted by - Retina UK

29th of May 2025

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. For more information and to book a place, click the link provided

Hosted by - Retina UK

9th of July 2025

Retina UK Men's peer support group (online)

The meeting is a safe, friendly & welcoming place which will give guys with sight loss the opportunity to all sit around a virtual table and discuss what’s on their minds. For more information and to book a place, click the link provided.

Hosted by - Retina UK

26th of November 2025

Retina UK Men's peer support group (online)

The meeting is a safe, friendly & welcoming place which will give guys with sight loss the opportunity to all sit around a virtual table and discuss what’s on their minds. For more information and to book a place, click the link provided.

Hosted by - Retina UK