February 28, 2019

On This Rare Disease Day, NORD Says Show Your Stripes!

By National Organization for Rare Disorders (NORD) Staff


The National Organization for Rare Disorders (NORD)Ⓡ, the leading independent nonprofit organization representing the 25-30 million Americans living with rare diseases, has announced a new campaign for Rare Disease Day centering on three simple words: Show Your Stripes.

This call to action urges people to literally and figuratively “show their stripes” in support of rare diseases leading up to and on Rare Disease Day, which will be observed Thursday, February 28th, this year.

The zebra is the official symbol of rare diseases in the U.S. and is noted for its black and white stripes, which are central to its uniqueness. Everyone has his/her own stripes, those characteristics that make each individual distinct.

While each of the more than 7,000 rare diseases is unique, there are many commonalities that unite the rare disease community.

In the spirit of raising awareness regarding rare disease issues and celebrating Rare Disease Day, this year NORD is asking individuals, organizations and groups to show their stripes.:

  • Everyone is urged to wear stripes on Rare Disease Day (Feb. 28) to show solidarity in rare disease awareness and education, and to share that message.
  • Launch a Show Your Stripes challenge and dare your community of family, friends and associates to show their stripes for rare diseases as imaginatively as possible.
  • Individuals, companies and organizations are invited to initiate the challenge by thinking of creative ways to show your stripes. For example, people can dress up as zebras, add stripes to their vehicles and other transportation (buses, trains), and encourage employees to wear striped clothing that day for group photos to share with NORD.
  • Collect and share photos, stories and videos of individuals and colleagues, friends and families all wearing their stripes together on social media using the hash tags #showyourstripes and #rarediseaseday.
  • Use the Show Your Stripes social media profile frame as well as stickers, signage and other materials that can be downloaded and printed.
  • Encourage the hosting of events (virtual or live) in local communities to bolster interest and knowledge for the rare disease cause.

“At NORD, we are very proud to have been the flag bearer of Rare Disease Day in the U.S. for the past 10 years,” said Peter L. Saltonstall, President and CEO of NORD. “Now we are upping the ante with the Show Your Stripes campaign, which has a goal of increasing attention on rare diseases beyond the existing community and spreading it to the world at large. This is the start of a new wave of awareness and next-generation advocacy that we hope will become a part of Rare Disease Day for years to come, and we invite everyone to get involved.”

For more information on Show Your Stripes and to stay abreast of other Rare Disease Day 2019 events and initiatives, visit www.rarediseases.org.

Editor’s note: Allsup helps individuals living with rare diseases and other disabilities apply for SSDI and return to work.

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