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Mar. 6, 2019

TOPIC: Events, Featured News, Get Involved, Patient Stories, Patients & Members, Rare Disease Day

Rare Disease Day 2019 Notes and Successes

Posted by Christina Jensen

This year, NORD launched the #ShowYourStripes awareness campaign in time for Rare Disease Day (RDD) with a goal of increasing attention on rare diseases and engaging our community. Judging by the number of events, attendance at events, extensive media coverage, robust social media engagement and beyond, NORD is very proud to say that Rare Disease Day 2019 was a success in reaching the world at large!

The community rallied together in sending thousands of social media posts throughout the day. The global rare disease community helped to make #RareDiseaseDay trend for another year in 2019, and together #ShowYourStripes and #RareDiseaseDay reached over 7 million social users!


Rare Disease Day 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 is a sampling of that coverage:

  • MediaPlanet published an article by NORD’s Peter L. Saltonstall about raising awareness and the #ShowYourStripes campaign. The article was shared online and went into USA Today as a supplement.
  • CBS News shared patient stories that NORD collected through its website, in addition to a moving video.
  • Voice of America interviewed NORD’s Director of Education Programs, Sika Dunyoh, during their live television broadcast on global rare disease issues.
  • Change Together published a Q&A with the NORD Team on the importance of Rare Disease Day and the launch of Show Your Stripes.
  • PhRMA published a guest post from NORD’s Director of Federal Policy, Paul Melmeyer, on spurring innovation and raising awareness.
  • Bustle highlighted rare disease research organizations to donate to for Rare Disease Day, with NORD first on their list!
  • Springfield, MO KY3 TV ran a piece on an elementary school wearing their stripes to support a classmate with a rare disease.

Patient voices represented

To ensure that the patient voice was represented, NORD made it a priority to share patient stories in a variety of formats. First, NORD submitted a call for stories from the community on its website and published a number of them leading up to the big day. NORD also worked with NIH in providing patient story videos to be on display during the popular Rare Disease Day at NIH event in Maryland.


Videos went viral for Rare Disease Day

Our #ShowYourStripes challenge was accepted near and far! The “10 Things You May Not Know About Rare Diseases” video has been shared close to 3,000 times and viewed 60,000 times across social media! The introductory #ShowYourStripes campaign video had social media awash in stripes on, after and even before Rare Disease Day. The video was viewed over 65,000 times!


Advocacy and awareness events 

From coast to coast, advocates, patients and caregivers, educators and supporters planned impactful Rare Disease Day events. According to Rare Disease Day’s global founder, EURORDIS, over 500 events were planned in 100 countries. In the United States, NORD hosted 33 advocacy events and 18 university events. There were also 50 events submitted to the U.S. Rare Disease Day website.

 

 

 


Rare Disease Day Resolution passed in Senate

resolution establishing February 28, 2019 as Rare Disease Day was passed in the Senate last week. NORD would like to extend a huge thanks to Senator Sherrod Brown and Senator John Barrasso for sponsoring this important resolution and helping to raise awareness.


Connect with the community beyond Rare Disease Day

The Living Rare, Living Stronger NORD Patient & Family Forum will be hosted in Houston, TX June 21-23, giving the rare disease community an opportunity to connect in person beyond Rare Disease Day. Registration will be opening soon! Stay tuned for details!