Welcome - Cystinosis Community

What is Cystinosis ?

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

Source: Participating patient organizations visible below

Cystinosis Resources

More members stories

Latest Member Stories

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

by nanabuddyadamchichi published 8 months ago
No comment

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 ...

31 Years Ago

by Christine published 11 months ago

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...