Patient Stories

Behind every ciliopathy there is a person and a family. These are their own accounts, in their own words: what led to a diagnosis, what daily life is really like, and what has helped.

Use the filters to find the stories closest to your own situation.

six volunteers standing in a semi circle wearing Retina UK blue tshirts with white RetinaUK emblems with collection boxes

Patient Story of Living with Retinitis Pigmentosa

Our trustee, Fiona Copeland, recently met Adrian at a fundraising event for Retina UK. He shared with her his Retinitis Pigmentosa (RP) diagnosis and how it affects him every day. He is keen to share his story to help raise awareness of RP and to help demons…

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Fiona Copeland in royal blue dress with yellow and blue graduation gown

Honorary Doctor Fiona Copeland Congratulations

“Life throws you curveballs, it’s what you do with them that matters.” When Fiona Copeland first heard that both her sons had been diagnosed with a rare lung condition, her mind jumped straight to wheelchairs and limitations. Instead, her fight reshaped the…

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If you or someone in your family lives with a ciliopathy, we would be glad to hear from you. Your story helps other families feel less alone, and it helps us show why research and support matter. You choose how much to share, and nothing is published without your agreement.

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