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Retina UK

Retina UK is the national charity for families living with inherited retinal dystrophies. We fund research and provide information and support to those affected by inherited sight loss and the professionals who support them.

We 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.

Helpline: 0300 111 4000 – Our helpline is operated by volunteers all directly affected with a genetic eye disorder, who genuinely understand the issues faced with daily living.

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.

Discover Wellbeing - we offer wellbeing support both for people living with inherited retinal conditions and also for family members who support them.  We have 3 free online courses available to work through, there is also the option of having support calls from a Wellbeing Volunteer.

To find out more about the telephone, online, and face-to-face services offered by Retina UK please visit our website:

Who to contact

Contact Name
Contact Position
Information and Support Coordinator
Retina UK Website

Other Details


Referral required
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