Living with inherited sight loss? Make your voice heard!

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Retina UK has just launched their second audience insight survey and would like to encourage as many people as possible to take part. Anyone who lives with inherited sight loss or is the parent/carer of someone with a condition can get involved. Parents/carers should complete the survey from the child’s perspective.

The questionnaire can be completed:

  • on paper (request a copy by phoning 01280 821334)
  • online survey (opens SurveyMonkey)
  • over the phone (call 01280 821334)

This survey follows the first Retina UK sight loss survey which took place in 2019. More than 900 people took part and their feedback has directly led to the following initiatives from the charity:

  • The inherited sight loss community wanted to hear more from Retina UK on treatment updates, research progress and managing life with sight loss so they started new monthly webinars and podcasts on a variety of topics.
  • They said that they benefit from informal meetings with others affected by sight loss, so they moved their local peer support group meetings online during the pandemic and are setting up new ones.
  • They were not aware of genetic testing or that it was not available to them, so they launched their innovative Unlock Genetics website, packed with information to enable people living with inherited sight loss to make informed choices.
  • The community told them about the emotional or psychological impacts of their condition, so they created accessible wellbeing modules for their helpline volunteers, and now they’re developing these for their community.
  • They told them how inherited sight loss impacts on their daily lives. They shared these experiences with decision-makers who agreed to the first treatment for inherited sight loss being available on the NHS.

The survey (opens Retina UK website) will close on Wednesday 27 April and can be completed anonymously.

Please encourage those you are in touch with to take part as we are aiming for a high number of responses.

Social media

  • Living with an Inherited Retinal Dystrophy? @RetinaUK needs your help by completing their #SightLossSurvey. Find out more at
  • By sharing your views and experiences in the @RetinaUK #SightLossSurvey you can help ensure their current and future activities are relevant and that they respond the needs of people living with an inherited retinal dystrophy
  • #MakeYourVoiceHeard by completing the @RetinaUK #SightLossSurvey
  • As a result of the @RetinaUK 2019 #SightLossSurvey the first treatment for inherited sight loss was made available on the NHS. Take part in the latest survey now

For more information, please email Jane Russell, Communications Manager or call on 01280 821334 / 07719 967368.

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