Four people sitting in a line. The person furthest away from the camera is the only one facing towards it. He is wearing a white shirt

Involving our community

Our community is informed and knowledgeable about current research projects into the cause(s) of and treatments for these conditions.

Inherited Retinal Dystrophies (IRD) are a group of rare conditions which result in progressive sight loss. Many of our community are willing to take part in studies and trials to support the work of the research community.

People affected by IRD who are particularly keen to participate in research-related activities can join the Retina UK Lived Experience Panel. Members of the Panel receive an email from us whenever we are made aware of a participation opportunity.

We actively encourage our community to register for the Panel via our newsletter, Look Forward (published three times each year) and our monthly e-Newsletter. We collect as much information as possible about Panel members’ diagnoses, and can filter recipients if appropriate.

Participation has included industry-led interviews and patient committees, and questionnaire-based studies on auditory processing with visual impairment and attitudes to gene therapies. Interaction between those living with IRD and the research community is essential for progress; it also provides our community with choices about participation, and opportunities to influence the direction of research.

If you would like to find out more about how we can help with recruitment to your study, please get in touch with our Research Development Manager, Kate Arkell, by emailing

Join our Lived Experience Panel

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