Cystinosis Resources

Social Media Graphics

Early Symptoms of CystinosisCystinosis Disease DefinitionsCommon Cystinosis MedicationsCystinosis Infographic


Cystinosis Research Foundation
Cystinosis Research Network
Cystinosis Foundation

Cystinosis Foundation UK
Cystinosis Foundation Ireland

Australian Cystinosis Support Group

Cystinose Groep Nederland

Cystinose Selbsthilfe e.V.

Associazione Cistinosi

Grupo de Suporte à Cistinose Nordeste do Brasil


CRF 2014 Hope Through Research
Day in the Life with Cystinosis
Living with Cystinosis: A Closer Look
Know Cystinosis Whiteboard Animation
What is Nephropathic Cystinosis

Support Groups

Cystinosis Family Canada – Famille cystinose Canada
Parents Of Children With Cystinosis Support
Cystinosis Family


Cystinosis Reseach Network: Cystinosis Parent Handbook
Cystinosis Foundation: Nephropathic Cystinosis


Sam and Lars: A great blog that follows two boys with cystinosis
A Happy Girl: An amazing, positive blog written by a woman and mother living with cystinosis
The Bright Side of Everything: Another great blog written by a women living with cystinosis who celebrates the beauty in every day

3 thoughts on “Cystinosis Resources”

  1. Hi my 3 and a half year old little boy has just been diagnosed with Cystinosis, I don’t really know an awful lot about it. I would be very grateful if someone living with this condition or a parent to someone with it could contact me via email, thank you, Jamie


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