Advocating for yourself or your child 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:
Get information about living with cystinosis by email.