Cystinosis United!
Welcome to
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.
Help along your cystinosis journey
Living with cystinosis presents daily challenges. These tips and tools may help you meet them head on.
Get tips for everyday living
Tips for advocating for yourself or your child
Find out how to speak up and be heard while living with cystinosis.
Finding your cystinosis treatment
Have a meaningful discussion with your doctor about your treatment options.
Tracking cystine levels
It’s one of the most important things to do to manage cystinosis.
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