Welcome to Cystinosis United!
If you’re living with cystinosis, you know it’s a lifelong journey, but you don’t have to feel like you’re alone. Here you’ll find tips, tools, and helpful advice from people who are living with cystinosis that can help you meet the challenges of living with cystinosis every day.
Learn More About Cystinosis with Michael
Michael has cystinosis. Join him, his family, and friends as they navigate what life is like living with cystinosis.
Help Ruby find all the cystinosis crystals!
Travel with Ruby as she hunts for crystals through the body!
Teens with cystinosis: You’ve got this.
Tips to help teens live with cystinosis while juggling life, school and friends!
The self-care project: Project you!
Inspirational tips and goals to help adults with cystinosis live a healthy life.
Staying on Course During Transplant
Whether you are getting ready for your first kidney transplant or you have been through one before, use this guide to feel better prepared and informed.
Featured Topics
Get help explaining cystinosis
Do you ever get tired of explaining to others what cystinosis is and how it affects you? We have created a video “I Live with Cystinosis” you can share with others to do the explaining for you!
Insights from a doctor
Watch pediatric nephrologist Dr. Ken Lieberman discuss critical issues like involving siblings, the best time to do white blood cell testing, involving children in their healthcare decisions, adequate nutrition, and more.
Tips for advocating for yourself or your child
Find out how to speak up and be heard while living with cystinosis.
Finding the right cystinosis treatment
Understand your treatment options so you may have a meaningful discussion with your doctor.
Tracking cystine levels
It’s one of the most important things to do to manage cystinosis.
Stay connected
Get information about living with cystinosis by email.