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Jan. 16, 2019

TOPIC: Advocacy, Events, Featured News, Patients & Members, Press Releases, Rare Disease Day

NORD Issues New Rare Disease DayⓇ Rallying Cry: Show Your Stripes™!

Posted by Lisa Sencen

Washington, DC, January 16, 2019–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, with a call to action for 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 on February 28th this year.

The zebra is the official symbol of rare diseases in the United States 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 are 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 will promote specific ways that individuals, organizations and groups can show their stripes. NORD will:

  • Ask all to wear stripes on Rare Disease Day to show solidarity in rare disease awareness and education, and to share that message.
  • Launch a Show Your Stripes challenge, in which the general public will be dared to show their stripes for rare diseases as imaginatively as possible. NORD will recruit influencers – individuals, companies and organizations – to initiate the challenge by thinking of creative ways that they will show their stripes (examples we hope to see: individuals dressing up as zebras, striping a car, 400+ employees at a company all wearing stripes, striping a train car or advertising on trains).
  • Collect and share photos, stories and videos of individuals and their colleagues, friends and families all wearing their stripes together on social media using the hashtags #showyourstripes and #rarediseaseday.
  • Provide a 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 ten 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.

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About the National Organization for Rare Disorders (NORD)

The National Organization for Rare Disorders (NORD) is the leading independent advocacy organization representing all patients and families affected by rare diseases.  NORD is committed to the identification, treatment and cure of the more than 7,000 rare diseases, of which approximately 90% are still without an FDA-approved treatment or therapy. Rare diseases affect 25-30 million Americans. More than half of those affected are children.

NORD began as a small group of patient advocates that formed a coalition to unify and mobilize support to pass the Orphan Drug Act of 1983. For more than 35 years, NORD has led the way in voicing the needs of the rare disease community, driving supportive policies and education, advancing medical research, and providing patient and family services for those who need them most.  NORD represents more than 280 disease-specific member organizations and their communities and collaborates with many other organizations in specific causes of importance to the rare disease patient community.