Cystinosis United!

Welcome to

Cystinosis United^® is a resource, brought to you by Amgen, 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.

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.

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.

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.