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Jan. 8, 2019

TOPIC: Advocacy, Featured News, Rare Disease Day

Rare Disease Advocates Share Ideas for How to Mark Rare Disease Day 2019

Posted by Lisa Sencen

Each year on the last day of February, the rare disease community comes together on Rare Disease Day to raise awareness for millions of people who are impacted by rare diseases.

This year’s Rare Disease Day is just 51 days away! As the Official U.S. sponsor, NORD rallies rare disease advocates, patients and families, medical professionals, industry, researchers, and anyone interested in the cause to get involved in Rare Disease Day activities. In doing so, we know that there are hundreds of events and activities that take place across the country, but we also understand that it can be difficult to plan ahead for Rare Disease Day.

To get a better understanding of what the community had going on leading up to the big day, we polled our Facebook followers to see who already had plans and who needed some ideas. We found that the majority of people needed help coming up with ideas for how to mark Rare Disease Day and so to help, we asked our email subscribers and social media followers what they have done in the past and what they are doing for 2019.

See some of the responses below for Rare Disease Day inspiration:

Andrea S. – Hosting a fundraiser for GIST Research in Washington, D.C. with The Life Raft Group.

Jill B. – Handing out packets of information and treats to her local first responders and posting on social media.

Elizabeth W. – Hosting a fundraiser for NORD at her local brewery where she will hand out fact sheets on rare diseases and information on NORD and Rare Disease Day.

Tekeisha Z. – Releasing a book highlighting stories of children with rare diseases.

Daniel S. – Working on having Rare Disease Day proclamations issued in Texas.

Tahira T. – Using Rare Disease Day as a medium to communicate and raise awareness for SMA in Pune, India.

Daniel S. – Hosting a countdown to Rare Disease Day on his Facebook page.

Peter D. – Hosting a fundraiser for NORD at his high school where students can pay to dress down for the day. Peter will also hand out information packets about NORD to raise awareness.

This year, we are kicking off a new campaign that centers 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. In the spirit of raising the profile of the rare disease community at large and celebrating Rare Disease Day, this year NORD will promote specific ways that individuals, organizations and groups can show their stripes. These will include:

  • Asking all to wear stripes on Rare Disease Day to show solidarity in rare disease awareness and education, and to spread that message
  • Launching a Show Your Stripes Challenge, in which the general public will be challenged 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 buses, etc.).
  • Collecting and sharing photos, stories and videos of individuals and their colleagues, friends and families all wearing their stripes together on social media using hashtags #ShowYourStripes and #RareDiseaseDay

Next week, we look forward to launching a new and improved Rare Disease Day website where you can find additional information on the Show Your Stripes campaign and even more ideas on how to get involved. In addition, there will be a listing of events to register for, a social media toolkit, graphics to share, a place to post your own event, share your story, and much more! Stay tuned for the big reveal by following NORD on Facebook and signing up for email alerts here.

Happy Rare Disease Day planning!