Read the full recap below
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NORD banner with tagline "Alone we are rare. Together we are strong."
Moving graphic, which says "Show Your Stripes on Rare Disease Day February 28th"

You Made an Impact on Rare Disease Day

For a fourth year, NORD celebrated Rare Disease Day with our #ShowYourStripes campaign. This popular campaign invites supporters to embrace their stripes and show that rare is not just strong, but proud!

With record virtual event turnout and robust chatter across social media platforms and beyond, NORD is very proud to say that Rare Disease Day 2022 was a success!

Watch the Virtual Celebration On-Demand

Show Your Stripes graphic with zebra
In an effort to bring the rare community together virtually, NORD hosted an hour long virtual event, which shared stories from patients and caregivers and featured celebrity appearances from Olympic gold medalist Gabby Douglas and actor Sean Astin, as well as musical performances by Christian Guardino.

With nearly 1,500 individuals registered ahead of the event, we were treated with a robust live chat and almost 200 submissions to our dedication wall!

Light Up For Rare

Advocates from across the country pledged and successfully illuminated landmarks and buildings in Rare Disease Day colors as part of NORD's
#LightUpforRare initiative.

Terminal Tower, Cleveland, OH
Zakim Bridge, Boston, MA
Governor Mario M. Cuomo Bridge, NY

Rare Disease Day Online

Across social media we saw your stripes! Thanks to thousands of posts, #RareDiseaseDay was present on Twitter's top 10 trending list on February 28, with hundreds of posts published on LinkedIn, Facebook, Instagram, and TikTok as well. Together, NORD estimates that our event hashtags reached millions of people in the US and were a huge part in making this big day a success across the world.


The NORD member organization #ShowYourStripes contest reached over 42,000 people and generated more than 3,000 votes for these creative entries. Congratulations to our winners The Yellow Brick Road Project, CACNA1A Foundation, and ASCL Rare Research Endowment Foundation! View the winning submissions below or check out all of the amazing submissions in our Facebook album.
The Yellow Brick Road Project, Inc.
CACNA1A Foundation
ASXL Rare Research Endowment Foundation
Rare Disease Day and NORD in the News

This year, NORD was featured in a number of national, local, and industry media outlets as part of Rare Disease Day coverage. Here are some highlights:

Keep an eye out for upcoming media stories in other major news outlets!

Graphic for the Living Rare Forum, happening on June 26, 2022

Get Ready to Rock With Us In Cleveland!

NORD is excited to announce that the Living Rare, Living Stronger Patient and Family Forum will be back in-person this year and we are headed to Cleveland! Join us on Sunday, June 26 for a day of building connections and education on how to live your best rare life. Close out the night by hopping on a shuttle to be whisked away to the Rare Impact Awards at the Rock & Roll Hall of Fame!

PLEASE NOTE: Capacity to this event will be limited to align with health and safety practices, so be sure to register soon.

Thank You to All of Our Sponsors and Supporters
Graphic for Rare Disease Day sponsors and supporters logos
NORD logo
NORD, a 501(c)(3) organization, is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 330 patient organization members, is committed to the identification, treatment and cure of rare disorders through programs of education, advocacy, research and patient services.
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National Organization for Rare Disorders, 1900 Crown Colony Drive, Suite 310, Quincy, MA 02169, United States

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