rare disease day

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....

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

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

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

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

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