Resources and Support

pdf_icon    Downloads

These resources will help you answer questions about cystinosis. Download them for yourself, or print them out to share with others.

Cystinosis an Introduction: Download>>

Cystinosis an Introduction

Recognizing the Early Symptoms of Cystinosis: Download>>



Cystinosis Medical ID Card: Download>>

Screen Shot 2016-04-28 at 2.40.09 PM


What Happens When Cystine Control Fades Away … Download>>

Screen Shot 2016-04-28 at 2.50.43 PM

Know Dialysis: An Awareness Guide … Download>>


School and Social Guide … Download>>

School and Social Guide

Growing Up You: a patient transition guide … Download>>




community small   Advocacy Groups

When you need information or want to connect with other families with cystinosis, reach out. There are many people who have experiences to share with you. Here are some resources you can turn to.

Cure Cystinosis International

The Cystinosis Foundation
(888) 631-1588

Cystinosis Research Foundation
(949) 223-7610

Cystinosis Research Network
(866) 276-3669