Cystinosis United!

Welcome to

Cystinosis United® is a resource, brought to you by Horizon Therapeutics, for people living with or caring for someone with cystinosis. Here you will find tips, tools, and support to help you meet the daily challenges that  may come up on your cystinosis journey.

Get information just for you.

Caregivers

Learn more

Some things you will find in this section:

  • Ways to help you relieve stress and stay healthy
  • Resources to help educate your child’s school about cystinosis
  • Tips about how to handle bullying
  • Information about 504 plans and IEPs that can help your child in the classroom
  • Access to caregiver support resources 
  • Information to help better understand cystinosis, how it affects the body, and how it is treated
  • And much more.

YouthS and Teens

Learn more

Some things you will find in this section:

  • Information to help better understand cystinosis, how it affects the body, and how it is treated
  • A video you can share with friends and family that explains what life is like with cystinosis 
  • Tips for talking to your doctor
  • A fun and interactive virtual reality experience to help you better manage cystinosis
  • Access to The Hangout: a place where you’ll find ways to make “adulting” a bit easier 
  • And much more.

Adults

Learn more

Some things you will find in this section:

  • Information to help better understand cystinosis, how it affects the body, and how it is treated
  • Strategies for staying on track with your treatment 
  • A video you can share with friends and family that explains what life is like with cystinosis 
  • Information about self-care
  • Help for talking to your doctor
  • And much more.

Try it
Tuesday

Trying new things can be fun
and good for your mental health

Journal 5 things from last week that gave you energy or joy.

Try it Tuesday

Need some ideas about new things you can try and explore? 

Click on the card and see what is revealed. There are so many things you can do. Trying new things can be fun and good for your mental health. 

Come back to this website on the first Tuesday of each month. If you miss a month, you can access the archive and find the ideas there. Enjoy!!

Read a book and discuss in online forums.

Get an idea jar; whenever you think of something cool or fun, write it down and put it in the jar. When you have free time, take one out and do it.

expand_less