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What is Cystinosis ?

Cystinosis is a lysosomal storage disease characterized by the abnormal accumulation of the amino acid cystine.

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Latest Member Stories

What is wrong with me?

by ElinFiona published 1 day ago
One comment

Have you ever felt a vacuum moving through your arms and legs, like your inner skin are ripped off? This happened to me January 2016. It was extrem...

From WithIn.........A Child's Life Journey with Cystinosis

by nanabuddyadamchichi published 4 months ago
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I have decided it really is not the destination, but the journey that makes us who we are and what we will become, regardless of what challenge is ...