Welcome! February 28th is quickly approaching as we prepare to celebrate Rare Disease Day.
We've created a sticker to help family and friends communicate the importance of raising cystinosis awareness and education through any gesture - big or small.
This, however, is no ordinary sticker. It was inspired by a structure standing 12 foot (3.66m) tall. It was thoughtfully created containing 2,000 green lights, one light for each person living with cystinosis. The outline of white lights represent those who have passed but remain part of who we are today. This symbolic gesture has been captured in a ribbon sticker ready to travel the globe spreading awareness, education, support and love for our cystinosis warriors...thanks to you!
Once your ribbon arrives, start sharing! Post it for the world the see. If you are on social media, tag your ribbon photo with #mycystinosis to educate others about cystinosis and what it means to you (the good, the bad, and sometimes the ugly). Your post could help another family or individual trying to manage daily life with a rare disease.
Please complete the form below.
Reminder: If you’ve subscribed to the comic book series, a sticker is on the way.
There are more great way to get involved. Find out more.