People with cystinuria share stories, insights, and inspiration

If you have cystinuria, you know how painful and frustrating it can be. But you are not alone. Other people with cystinuria have likely been through similar experiences. Through diligent management, self-advocacy, and partnership with their doctors, they are now living active and fulfilling lives. Listen to their stories.



Tim was diagnosed with cystinuria relatively quickly after his first stone event because his older brother also has the disorder. By working with his doctor to set overall goals for his long-term health, Tim is staying on top of his cystinuria. He has a clear plan to avoid cystine stones—and he's sticking to it.



After multiple surgeries, Trevor committed to taking better care of his health and found success in managing cystinuria. He has developed a strong partnership with his doctors—and the family and friends who support him.

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.