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 is your 57?
It is a call to action that can be big or small; 57 reflective words about the disease or 57 friend and family contributions, 57 minutes of walking to 57 acts of kindness.
We encourage everyone to choose something meaningful they can share and spread the word. Every single action makes a difference in the fight against cystinosis.
How will you choose to honor this momentous occasion?
(To donate via our secure, tax-deductible form, click here)
