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Cystinosis Awareness Day 2025
May 7
Now in it’s eighth year, Cystinosis Awareness Day was created to shine a spotlight on our rare disease. Spreading information about cystinosis has the power to create a better future for the ~2,000 diagnosed and those awaiting a diagnosis. How will you celebrate May 7th?
There are many ways to show your support.
- Be Seen, Flood It Green. Update your profile picture or simply save and share on your social channels the image provided here (or anything with a green theme) and #cystinosisaware. If you want to take it a step further, share a fact about cystinosis or share something you wish others knew
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Ask Me Anything (AMA). AMA is a powerful way to raise awareness by connecting, sharing, and engaging by openly answering questions about a topic, like cystinosis. Leading up to awareness day we will provide these Q+A opportunities. If you’d like to pose a question or volunteer to provide answers, email info@cystinosis.org or comment on our socials
- Double Your Donation Days. From May 1–15, 2025, every dollar you give to CRN will be matched—fueling twice the support for cystinosis research and programming. Make a tax-deductible contribution today
- Visit our How to Help page for more
