Welcome to Cystinosis United!
If you’re living with cystinosis you know it’s a lifelong journey, but you don’t have to feel like you’re alone. Here, you’ll find tips, tools, and helpful advice from people who are living with cystinosis that can help you meet the challenges of living with cystinosis every day.
Help along your cystinosis journey
Living with cystinosis presents daily challenges. These tips and tools may help you meet them head on.
Get tips for everyday living
Michael’s Show-and-Tell Activity Book
Download this fun activity-filled book to help children better understand cystinosis.
Teens with cystinosis: You’ve got this.
Tips to help teens live with cystinosis while juggling life, school and friends!
The self-care project: Project you!
Inspirational tips and goals to help adults with cystinosis live a healthy life.
Tips for advocating for yourself or your child
Find out how to speak up and be heard while living with cystinosis.
Finding your cystinosis treatment
Have a meaningful discussion with your doctor about your treatment options.
Tracking cystine levels
It’s one of the most important things to do to manage cystinosis.
