Cystinosis Awareness Day – 3rd Annual

Cystinosis Awareness Day is recognized as May 7th for the most commonly linked cystinosis mutation, the 57-kb deletion. This marks the third year we’ve come together on this day to support education, awareness, research, and fundraising for our rare disease.

Months of planning go into Cystinosis Awareness Day. In-person events like 57 Miles for Cystinosis or Miles for Moose require training, sponsors, team coordination, and consume a massive amount of time and dedication. With the latest COVID-19 restrictions, this year’s events have been canceled, postponed or re-imagined. We thank the entire community for your unwavering support – now more than ever.

It’s like our CRN President says, “Cystinosis doesn’t stop. Until there is a cure, neither will we.”

Cystinosis does not ease up during a worldwide pandemic; it does not understand quarantine. Not for one single day, not for one hour, not for one second do bodies living with cystinosis get a break. And we thank you for enduring this ongoing battle with us.

Here are a few ways to help us in this fight:

• Like & share our awareness video
• Update your Facebook profile frame
• Share your cystinosis experience with a friend, neighbor, or colleague (in compliance with your local COVID-19 guidelines)
• Read inspiring cystinosis stories
• Donate
• Start a fundraiser by emailing info@cystinosis.org

If you’d like to learn more about cystinosis resources and research, click here. We are proud to be one of the only organizations to provide comprehensive support, education, awareness, and research relevant to each point in the cystinosis journey.

Thank you!