Advocating for yourself or your child with cystinosis

People living with cystinosis

Advocacy is learning how to speak up for yourself or your child while living with a disease. By doing so, you may get the information you need to make good decisions about your health and well-being. Being your own advocate involves finding support, knowing your rights, and learning how to solve problems. Most people with a lifelong disease such as cystinosis learn how to become an advocate, and you can, too.

Some ways to make sure you are ready to speak up include:

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