Tag: rare disease day

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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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