Community of united people living with cystinosis

United to live well with cystinosis

Connecting with a community can help you find your way on your cystinosis journey. Whether you're a patient, caregiver, sibling, or spouse, unity makes choices—big and small—less complicated.

Get tips to help with everyday living

We're Cystinosis United, and we're glad you're here

Cystinosis United is a growing community of people—like you—who want to live their best lives with this rare disease. By uniting to share our experiences and tips we've learned along the way, we grow stronger, more confident, and better prepared to face the challenges of cystinosis.