Tips for advocating for yourself or your child with cystinosis

People living with cystinosis

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

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