Welcome - Cystinosis Community

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

31 Years Ago

by Christine published 3 months ago
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31 years ago I had the good fortune of giving birth to my first daughter, the most beautiful girl in the world, to me! A year later I found out the...

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

by nanabuddyadamchichi published over 3 years 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 ...