Youth and Teens

You and your caregivers have been managing cystinosis since you were very young. Check out these resources to help you better understand your disease and how it can affect your body, how it is treated, and how to manage day-to-day life with cystinosis.

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Help Ruby find all
the cystinosis crystals

Watch this video and travel with Ruby on her quest to find and remove cystinosis crystals throughout the body.

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Make It a Reality:
 go on fun adventures

Join Rapido the Sloth and Remmy the Robot on some fun adventures in a virtual reality experience designed to support you in your management of cystinosis.

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Tools to keep you 
going on your journey

Find tips to help you juggle life, school, friends, and cystinosis. Discover the importance of moving your muscles, what to bring when you go out, the right sunglasses for your face shape, and more.

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Get help
explaining cystinosis

Do you ever get tired of explaining to others what cystinosis is and how it affects you? Here is a video, “I Live with Cystinosis” which you can share with others to do the explaining for you!

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Learn more about 
cystinosis with Michael

Staying on course while transitioning from pediatric to adult health care

Michael has cystinosis. Join him, his family, and friends as they navigate what life is like living with cystinosis. Download activity books and watch a video.

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Youth and Teens

You and your caregivers have been managing cystinosis since you were very young. Check out these resources to help you better understand your disease and how it can affect your body, how it is treated, and how to manage day-to-day life with cystinosis.

UNDERSTANDING CYSTINOSIS

TREATING CYSTINOSIS

LIVING WITH CYSTINOSIS

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