Cystinosis Awareness Day

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.

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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:

  • Share Your Rare. Tell your cystinosis story to friends, family, classmates and colleagues. Post on social media and request a free cystinosis ribbon sticker
  • Become a Cystinosis Day Ambassador. With our guidance, U.S. families/individuals will lobby state representatives to pass a resolution declaring May 7th National Cystinosis Day
  • Fundraising. Start your own cystinosis fundraiser or piggyback on an existing Cystinosis Awareness Day event. This can be a walk/run, gala, golf outing, or online donations via your Facebook page
  • Donate. Help support finding a cure for cystinosis by making an online donation or mail a check payable to "Cystinosis Research Network" to Cystinosis Research Network, 302 Whytegate Court, Lake Forest, IL 60045 USA

Email This email address is being protected from spambots. You need JavaScript enabled to view it. to get started. For additional ways to make an impact, visit our Get Involved page.

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