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Classified in: Health
Subjects: NPT, FVT

NORD Issues a Rare Decree: Show Your Stripestm for Rare Disease Day®


WASHINGTON, Jan. 16, 2020 /PRNewswire/ -- 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.

National Organization for Rare Disorders (NORD) logo. (PRNewsFoto/National Organization for Rare Disorders (NORD))

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.

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.

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 more than 7,000 rare diseases, of which approximately 90% are still without an FDA-approved treatment or therapy. Rare diseases affect over 25 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 is made strong together with 300 disease-specific member organizations and their communities and collaborates with many other organizations on specific causes of importance to the rare disease patient community. Visit rarediseases.org.    

SOURCE National Organization for Rare Disorders (NORD)


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News published on 16 january 2020 at 13:45 and distributed by: