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Odette’s story

I first came to London in the mid-1980s from France to work as an au pair, which allowed me to spend my evenings taking part in dance classes at the London Contemporary Dance School. However, after a couple of years in the capital, I began to see bright sparkly spots in front of my eyes…

Survey of Inherited Retinal Disease (IRD)

The Inherited Retinal Dystrophies Consortium invites you to participate in a survey of Inherited Retinal Disease (IRD) patients and those who care for them. Have you or someone you know been diagnosed with an IRD? The impact of these conditions is important to the IRD community, researchers, clinicians, policy makers and pharma. If you are…

Art Therapy Session

“Inspiring, relaxing, fun and calming” were some of the words used to describe the Stargardt’s Connected Art Therapy session at the London Art Therapy Centre. Thank you to Elaine and Sarah for leading the session so brilliantly and to those who came. A super afternoon of amazing creative art.

Bhavna’s story

In September 2015, my son Ethan was diagnosed with Stargardt’s disease when he was just seven years old; a condition we had never heard of. Being told that he was losing his eyesight and that there was no cure or treatment for Stargardt’s disease was the most devastating news we had ever been given. Despite…

Toby’s story

I was diagnosed with Stargardt’s in my mid-teens. It was a big blow, especially as I had to give up my beloved ball sports as my sight deteriorated. Strangely as it now seems, though, I decided to keep my condition secret from my friends and teachers for a long time, and pretend nothing was wrong.…

Robert’s story

I was diagnosed with Stargardt’s in the summer of 1981, shortly before my 21st birthday. On the day of diagnosis I was given the option to be registered partially sighted but declined the offer. I was also informed that, as of that day, I was not allowed to drive anymore; the latter being the hardest…

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