First Annual Cystinosis Awareness Day

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Spread cystinosis awareness on Rare Disease Day, Cystinosis Awareness Day and all year long!

We’ve transformed the cystinosis awareness ribbon into a temporary tattoo. Now you can “wear your rare” and help start important conversations.

Once your temporary tattoo 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.

Did you know? Our awareness ribbon 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. Now, this symbol of strength has been transformed into a temporary tattoo ready to travel the globe spreading awareness, education, support and love for our cystinosis warriors…thanks to you!

I’d like a free cystinosis temporary tattoo!
Please complete the form below. We ship internationally. Recommended for ages 4+. If you have questions or know someone who’d like one, email

There are more great ways to get involved. Find out more.


This was the first year our community celebrated Cystinosis Awareness Day on May 7th (5/7). This date was chosen to represent the most common cystinosis mutation: 57-kb deletion. Due to the overwhelming amount of love, well wishes and contributions received, the events tied to this day were a resounding success.


  • Over 25,000 people reached online. Cystinosis facts shared, Facebook profiles updated with the awareness ribbon and more contributed to this number.


  • 100+ donors.
  • More than $21,000 raised for cystinosis research.

Two special fundraisers were created to honor Cystinosis Awareness Day: 57 Miles for Cystinosis led by Clinton Moore and Hikes of Hope led by Jessica Jondle. Thank you for embarking on these ambitious journeys!

On behalf of the individuals and loved ones impacted by cystinosis, we send our heartfelt gratitude and look forward to expanding the impact we can make in 2019. Sign up for the task force by emailing Clinton at