This year our community will celebrate the first annual Cystinosis Awareness Day on May 7th. The goal is to educate our family, friends, healthcare teams and general population about cystinosis.
It is estimated that at least 2,000 individuals worldwide have cystinosis, though exact numbers are difficult to obtain because the disease is often undiagnosed and/ or misdiagnosed. Now is the time to improve diagnoses, improve treatments, advocate for our children and ourselves, and become relentless in our mission until a cure becomes a reality.
May 7th (5.7) was chosen to represent the most common cystinosis mutation: 57-kb deletion.
Stand with us on May 7th to make a difference in the community. Here’s how: