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Other Names for this Disease
- Cystine diathesis
- Cystine disease
- Cystine storage disease
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Organizations Supporting this Disease
Social Networking Websites
- The Cystinosis Research Foundation provides the !LINK!where people with cystinosis and their families can connect with others worldwide.
- DNAandU.org is a Web site and blog that collects firsthand stories from people facing issues, making tough decisions, and using genomic (DNA) information in their own healthcare. Click on the link to learn from their experiences and/or submit your own story.
- RareConnect has an online community for patients and families with this condition so they can connect with others and share their experiences living with a rare disease. The project is a joint collaboration between EURORDIS (European Rare Disease Organisation) and NORD (National Organization for Rare Disorders).
- RareShare is an online social hub dedicated to patients, families and healthcare professionals affected by rare medical disorders.