Tag: rare disease day

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Rare Disease Day: My Rare Journey

In recognition of Rare Disease Day 2023, the Adult Leadership Advisory Board compiled thoughts from a few cystinosis warriors....

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Rare Disease Day 2023

February 28, 2023 is Rare Disease Day. A movement created by Eurordis, Rare Disease Day unites an international community...

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Rare Disease Day 2022

February 28th marks the 12th annual Rare Disease Day (RDD). Observed on the rarest day of the year, the...

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Celebrating Life and Rare Disease Day

In Honor of Laura’s 35th Birthday and Rare Disease Day. An article by Marybeth Krummenacker I was trying to...

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Advocating For Our Daughter’s Rare Disease

Advocating for rare disease sometimes feels like fighting an uphill battle. Living with cystinosis means you are 1 in...

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Rare Disease Day 2020

How will you honor the “rarest” day of the year? Check out our cystinosis awareness giveaway. Sign up and...

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