Retina UK - Family support services

What we do

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.

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.

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

Who do we support

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.

Is there a charge to use this service?


Can anyone use this service?

no referral needed

Service details for this family support services

Language: English only

  • Can provide specialist support for families of children with disabilities / additional needs Yes Please contact to discuss your child(s) needs further. We support families affected by inherited progressive sight loss
  • Relevant staff have a valid current DBS? Yes


 You can send post here:

Wharf House, Stratford Road
Stratford Road
MK18 1TD

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 Opening times

office mon-fri 9-5
Helpline mon-fri 09.30 to 21.30