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

Rare Disease Day 2015

by RareConnect team published about 1 month ago No comment

Rare Disease Day takes place on the last day of February each year.

The main objective of Rare Disease Day is to raise awareness amongst the gen...

31 Years Ago

by Christine published about 1 year ago One comment

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...