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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Help along your cystinosis journey

Living with cystinosis presents daily challenges. These tips and tools from Horizon Therapeutics may help you meet them head on.
Get tips for everyday living

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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

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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

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What is cystinosis?

Get clear information about the disease.

Read on

Stay connected

Get information about living with cystinosis by email.