Take advantage of these tools and resources to help understand cystinosis better and prepare for managing your disease as you become more independent.
This downloadable brochure contains a brief questionnaire to track you progress over time, help you set goals, and guide you to take steps in managing cystinosis and life changes you are facing as an adult.
Whether you are getting ready for your first kidney transplant, or you have been through one before, use this guide to feel better prepared and informed.
Dialysis may become an important milestone in your cystinosis journey. Use this guide to feel better prepared and informed and get helpful ideas on how to stay positive.
Transitioning to adult health care is an important milestone in the cystinosis journey. There are things you can do to help navigate your transition, be responsible for yourself, and maintain independence.
Do you or your child ever get tired of explaining to others what cystinosis is and how it affects you? Here is a video called, “I Live with Cystinosis” you can share with others to do the explaining for you or your child!
Share video
The self-care project is your guide to help you realize your full potential physically, mentally, and emotionally. Self-care is the best care. That’s why it’s important to challenge yourself by setting goals, improving your overall well-being, and finding motivation.
The Hangout is a place where your teens can go to help figure out life with and beyond cystinosis. They can get motivation, tips, and inspiration.
Provide this handout to your family and friends to help them better understand cystinosis and support your needs.
Provide this handout to your family and friends to help them better understand cystinosis and support your needs.
Sometimes medical terms can be tough to understand. But learning the words used to talk about cystinosis may help you be clear with doctors, family, and friends. This glossary is a great place to start.
You are not alone. The resources below may help you meet others living with cystinosis, learn about advocacy programs, explain what cystinosis is, and much more.
Discover the many ways Amgen has supported people with cystinosis in Committed to the Cystinosis Community.
