Cystinosis Awareness Day 2026
May 7
Join the Cystinosis Awareness Day Movement!
Honor our 2,000+ warriors in the most meaningful way to you. Let’s educate, raise awareness and raise funds.
May 7th marks the 9th Annual Cystinosis Awareness Day (CAD). It started as a reference to the 57kb deletion in the CTNS gene, the most common genetic cause of nephropathic cystinosis. Since then, CAD has turned into a global day of recognition.
This year we ask – What’s your 57?
It is a call to action that can be big or small. We encourage everyone to choose something meaningful to them. If comfortable, share with neighbors, friends, loved ones, healthcare professionals, anyone who will listen. These simple actions can help others better understand cystinosis, drive earlier diagnosis and better care, generate stronger support, all in hopes of improving longterm outcomes.
Ideas on how to take part:
- Reflect on your cystinosis journey and write 57 words on how you are feeling today (share or keep it private)
- Located near Jacksonville, FL? Attend the in-person meetup on May 2 to celebrate the day with others
- Create a 57 second explanation about cystinosis to bring up in conversation
- Spend 57 minutes reading the latest on cystinosis and share one takeaway
- Ask 57 friends and family to donate to the CRN
- Complete 5-7 acts of kindness
- Utilize music, drawing, painting, or crocheting, etc to turn your answer into a work of art
- Text, email or call 5-7 people to talk about awareness day; tell them why it matters to you
How will you choose to honor this momentous occasion? Share with us at info@cystinosis.org or tag us on social media.
The Awareness Day donation campaign is now open. Use our secure, tax-deductible form to contribute here.
