Community of united people living with cystinosis

United to live well with cystinosis

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 part of a growing community of people—like you—who want to live their best lives with this rare disease. By uniting to share experiences and tips, people with cystinosis grow stronger, more confident, and better prepared to face the unique challenges of this condition.