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.

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Get help explaining cystinosis Get help explaining cystinosis Get help explaining cystinosis

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!

Watch now

Insights from a doctor Insights from a doctor Insights from a doctor

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.

Watch now

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Tips for advocating for yourself or your child

Find out how to speak up and be heard while living with cystinosis.

Learn more

Targeting cystinosis treatment goalsTargeting cystinosis treatment goalsTargeting cystinosis treatment goals

What is cystinosis?

Get clear information about the disease.

Read on

treatstreatstreats

Finding the right cystinosis treatment

Understand your treatment options so you may have a meaningful discussion with your doctor.

Explore options

Targeting cystinosis treatment goals Targeting cystinosis treatment goals Targeting cystinosis treatment goals

Tracking cystine levels

It’s one of the most important things to do to manage cystinosis.

Find out why

Stay connected

Get information about living with cystinosis by email.