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Rare Disease Day

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Rare Disease Day is an internationally recognized day and initiative to raise awareness, generate support and advocate for care and treatments for the 300 million people globally, including the 30 Americans (about half of whom are children) who are living with a rare disease. It takes place annually on the last day of February. This year Rare Disease Day is February 28.

About #ShowYourStripes Campaign This year the National Organization of Rare Disorders (NORD) #ShowYourStripes campaign has a goal to raise awareness and show support of the rare disease community. The zebra serves as the official mascot for rare disease patients. Historically, medical professionals were told that when they, “hear hoofbeats,” they should expect a horse, not a zebra. We now know that 1 in 10 people in the U.S. have a rare disease. It might not be obvious when you look at us, which is one reason why we ‘show our stripes, so people don’t dismiss that some patients might be zebras. Every zebra’s stripes are unique, mirroring the uniqueness and complexity of the more than 10,000 individual rare diseases, each of which impacts people in distinct ways. Dressing in zebra stripes is a way to “show up” for 30 the million Americans living with a rare disease, hence why we say #ShowYourStripes. Whether wearing zebra-print outfits, painting stripes on your face, or baking striped cookies, the goal is to celebrate individuality of all ages. We ask you to leverage your social media platforms (via stories or feeds) to bring awareness to the day, encourage your followers to show their stripes, and highlight those who embody the spirit of the day.

Rare, but not invisible. ❤️💙🦓 IgA Nephropathy may be considered rare, but for those of us living with it, it’s an everyday reality. Today, we raise our voices to drive research, awareness, and hope.

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Show Your Stripes

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February 28 All day

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References

  • Hall, Y.N., Fuentes, E.F., Chertow, G.M. et al. Race/ethnicity and disease severity in IgA nephropathy. BMC Nephrol 5, 10 (2004). https://doi.org/10.1186/1471-2369-5-10
  • Kiryluk K, Li Y, Sanna-Cherchi S, Rohanizadegan M, Suzuki H, et al. (2012) Geographic Differences in Genetic Susceptibility to IgA Nephropathy: GWAS Replication Study and Geospatial Risk Analysis. PLoS Genet 8(6): e1002765. doi:10.1371/journal.pgen.1002765