8 events found.
Cystinosis Awareness Day
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Cystinosis Awareness Day – 3rd Annual
Cystinosis Awareness Day is recognized as May 7th for the most commonly linked cystinosis mutation, the 57-kb deletion. This marks the third year we've come together on this day to support education, awareness, research, and fundraising for our rare disease. Months of planning go into Cystinosis Awareness Day. In-person events like 57 Miles for Cystinosis […]
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Featured
Cystinosis Awareness Day – 2021
Welcome to the 4th Annual Cystinosis Awareness Day! Started in 2018, Cystinosis Awareness Day was created to bring attention to our rare disease. Educating the general public and medical communities about cystinosis has the power to create a better future for the ~2,000 diagnosed and those awaiting a diagnosis. Since it's inception, Cystinosis Awareness Day […]
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Featured
5th Annual Cystinosis Awareness Day
On May 7, 2022 we celebrate the 5th Annual Cystinosis Awareness Day. This is an opportunity to educate the world about cystinosis, a rare disease that impacts 2,000 patients and their loved ones. Please join us in commemorating this event. Here are a few suggestions on how to participate: Check out the Cystinosis Warrior Impact […]
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Cystinosis Awareness Day
On May 7, 2023 the cystinosis community will come together in honor of Cystinosis Awareness Day (CAD). Now in it's sixth year, CAD is a global effort to raise funds and educate the general population about this disease. This year's campaign will include testimonials from cystinosis warriors, caregivers/family members and international cystinosis organizations. In addition, […]
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Cystinosis Awareness Day – Family Meetup
Cincinnati Marriott RiverCenter 10 W Rivercenter Blvd, Covington, Kentucky, United StatesSee you in Cincinnati, Ohio! On May 4th, we are gathering for an in-person meet-up at the Cincinnati Marriott River Center. Join us for a day of connection, education, and celebration commemorating the 7th Annual Cystinosis Awareness Day. Registration is required and is now closed. Please contact Chelsea with questions at chelseam@cystinosis.org. Draft Agenda 8:30a […]
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Cystinosis Awareness Day
Join us on and leading up to May 7th to promote cystinosis awareness, education and fundraising efforts. Our 7th annual awareness day campaign focuses on #CystinosisStereotypes with 3 ways go participate: share, create and/or donate. Share. Each day our community wakes up and challenges cystinosis stereotypes. Over the next few weeks we will be releasing […]
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Cystinosis Awareness Day 2025
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, […]
