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Jan. 16, 2020

TOPIC: Press Releases, Featured News, Advocacy, Rare Disease Day

NORD Issues a Rare Decree: Show Your Stripes™ for Rare Disease Day®!

Posted by Laura Mullen

Washington, DC, January 16, 2020–The National Organization for Rare Disorders (NORD®), the leading independent nonprofit organization representing over 25 million Americans living with rare diseases, is issuing a Rare Disease Day decree: Show Your Stripes! This campaign takes its cue from the majestic zebra, known for its distinctive stripes. NORD is imploring the world at large to show its stripes in support of the rare disease community leading up to and on Rare Disease Day, which will be observed this year on February 29, the rarest day of all.

Showing your stripes means embracing one’s uniqueness and expressing support for the approximately 300 million people worldwide living with rare diseases.

This year, NORD is asking individuals, organizations and groups in the US to participate and show their stripes for Rare Disease Day in a variety of ways.

  • Wear stripes on Rare Disease Day to show solidarity with the rare community
  • Challenge yourself and others to be as creative possible, from wearing head-to-toe stripes or zebra face paint to striping a lobby with banners or lighting up the exterior of a building with stripes
  • Share photos, stories and videos of you and your network showing your stripes together on social media using the hashtags #ShowYourStripes and #RareDiseaseDay
  • Host or participate in events (virtual or live) in local communities to bolster knowledge about the rare disease cause

For those near Washington, DC on Rare Disease Day, NORD is hosting a family-friendly event at the International Spy Museum called Rare Disease Day: Mission 2020. Join us at the museum on Saturday, February 29, 2020 to explore what it means to solve the case of your own rare disease!

“February 29 only comes once every four years, making it the zebra of the calendar. It is a truly rare day that the National Organization for Rare Disorders is proud to lead,” said Peter L. Saltonstall, President and CEO of NORD. “At NORD, we invite all to participate in the Show Your Stripes campaign for Rare Disease Day. We are stronger together and need everyone—those directly affected by rare diseases as well as the general public—to join us in this effort.”

Created by EURORDIS (The European Organization for Rare Disorders) and its Council of National Alliances, the first Rare Disease Day took place in 2008 with events in 18 participating countries. That number has increased each year, with thousands of events now taking place around the world. NORD is proud to join EURORDIS as the official US sponsor.

For more information on #ShowYourStripes, to stay abreast of other #RareDiseaseDay 2020 events and initiatives, and to download a selection of materials, including a social media toolkit,  media outreach templates, infographics and printable stickers, visit rarediseaseday.us.

 

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