Other Names for this Disease
- Cystine diathesis
- Cystine disease
- Cystine storage disease
See Disclaimer regarding information on this site. Some links on this page may take you to organizations outside of the National Institutes of Health.
- The Cystinosis Research Foundation provides the !LINK!where people with cystinosis and their families can connect with others worldwide.
- 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).