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
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
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
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!!