Do you have a rare eye condition known as Stargardt Disease?

Use your experience to guide research and help researchers develop a project aimed at preventing vision loss.

Stargardt disease is a rare inherited eye condition that affects central vision, making everyday tasks like reading and recognising faces harder over time. 

By learning more about these early changes in the eye, researchers at Cardiff University hope to support the development of future treatments to slow or prevent vision loss. We’re looking for people with lived experience of the condition to help shape the study, ensuring it reflects what matters most to those affected.

What experience do I need to help?

We’re looking for people who either:

• Have Stargardt disease, and/or
• Support someone who does (e.g. a family member or carer)
• Your lived experience is what matters most. You’ll help us make sure the research reflects what’s important to people living with this condition.

What will I be asked to do?

You’ll be invited to:

• Share your thoughts on our research plans
• Help ensure the study is relevant and sensitive to people’s experiences
• Review documents before the meetings

How long will I be needed for?

Your involvement will last around three months.

This includes:

• One online meeting, lasting an hour
• Up to four hours for meeting preparation and/or reviewing documents

What are some of the benefits for me?

• Make a real difference by shaping research that could improve future treatments
• Share your lived experience to ensure the study reflects what really matters to people affected by Stargardt disease
• Learn about the research process, including how studies are developed and approved
• Build your confidence and skills in contributing to health research
• Be part of something meaningful that places patient voices at the heart of scientific progress

What support is offered?

• The Principal Investigator will be the point of contact, and available for any queries and will provide support around meetings and document reviews.
• Cover reasonable travel expenses and additional carer or childcare costs,
• Offer payment for time of £25.00 per hour (people can request less if they are in receipt of state benefits). 

Have a look at our guidelines for more information about this. 

If you are receiving any benefits, you can access confidential advice from the Benefits Advice Service for Involvement.