With helpful tools and resources by your side, you can take more steps toward stone prevention

Download these materials to learn more about cystinuria and how to better manage it. Share them with family members and friends who may be able to offer support.

Managing cystinuria brochure

Learn why cystine stones form and how to partner with your doctor to establish a cystinuria management plan that's right for you.


Daily personal journal

Use this diary to track important details about your day-to-day experiences with cystinuria and the steps you take to manage it.


Why you should know your cystine level

Learn how regular monitoring with the 24-hour urine test and knowing
your urinary cystine level can help with cystine stone prevention.


Tap into other cystinuria resources

Cystinuria Resource: Rare Together

Join the Cystinuria Resource: Rare Together community on Facebook. This group is dedicated to individuals and families affected by cystinuria. This page offers information on cystinuria, as well as tips and advice on how to manage it, with the goal of preventing the next cystine stone.

International Cystinuria Foundation

Focused on supporting the cystinuria community by providing educational and health-related resources to affected individuals worldwide.

Check Orphan

Offers users an interactive platform whereby visitors have access to the latest news and information about rare, orphan, and neglected diseases.

National Kidney Foundation

Dedicated to making change through the awareness, prevention, and treatment of kidney disease for healthcare professionals, patients, and their families.