Are you or someone you know living with an inherited retinal dystrophy? Retina UK has just launched their second 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 young person’s perspective.
The questionnaire can be completed:
- on paper (request a copy by phoning 01280821334)
- online here
- over the phone (call 01280821334)
The survey follows the first Retina UK sight loss survey which took part in 2019. More than 900 people took part and their feedback has directly led to the following initiatives from the charity:
- new monthly webinars and podcasts on a variety of topics such as treatment updates and research progress
- online, informal meetings with local peer support groups
- the launch of Unlock Genetics, a new website page explaining how genetic testing may help families discover more about inherited sight loss condition
- accessible wellbeing modules for helpline volunteers and the community
- the first treatment for inherited sight loss being available on the NHS
By sharing your views and experiences in the survey, you can help ensure current and future activities are relevant and responsive to the needs of people living with an inherited retinal dystrophy. The survey will close on Wednesday 27th April and can be completed anonymously.