February 11, 2021

How Will You Show Your Stripes In 30 Days?

National Organization for Rare Disorders

Join NORD in Spreading Awareness for Rare Disease Day®, Feb. 28

Even with the world acutely aware of public health matters in light of the COVID-19 pandemic, there are millions in the U.S. and around the globe living with rare diseases that are largely unknown to the public. Rare Disease Day 2021 is approaching, and the National Organization for Rare Disorders (NORD®) is inviting all to join in shining a light on the challenges faced by individuals and families and the need for research into treatments and cures.

This year, NORD is asking individuals, organizations and companies in the U.S. to help highlight rare disease issues and the need for continued progress in research and drug development. Taking action and “showing your stripes” to spread awareness can be done in a variety of ways, including by:

  • Joining the Show Your Stripes movement and wearing stripes on Rare Disease Day, taking a photograph and posting it with a message of support on social media, using the hashtags #ShowYourStripes and #RareDiseaseDay. Discover more ways to Show Your Stripes here.
  • Advocating for more than 25 million Americans with rare diseases by participating in a NORD Rare Action Network™ (RAN) virtual Rare Disease Day event, in which key state policies (affecting patients and families) will be discussed. Register to take part in a RAN virtual Rare Disease Day event here.
  • Pledging to help our rare community light up as many buildings and landmarks as possible in Rare Disease Day colors (blue, green, pink and purple) on or around Feb. 28. This concept originated in 2019 when the Empire State Building in New York City was striped in Rare Disease Day colors thanks to the work of RocketPharma, a member of NORD’s Corporate Council. Find out more about NORD’s Light up for Rare campaign and how you can participate.
  • Watching “Behind the Mystery: Rare and Genetic” - the recurring rare disease series on the award-winning morning show The Balancing Act, airing on Lifetime Television. The show premieres on Feb. 24 at 7:30 a.m. ET and subsequently can be streamed online at com/Rare. It features NORD’s Lisa Sarfaty who presents facts on rare disease and how to get involved with the awareness day, and three patients sharing their inspiring stories: William Yank, a three-time leukemia survivor with his own podcast, clothing line and over 90,000 followers on TikTok; Kelly Barendt, a blogger and YouTuber with over 300,000 TikTok followers, relating her journey with Friedreich’s ataxia; and Travis Flores, a cystic fibrosis survivor and recipient of a very rare third double-lung transplant, sharing what he has learned from living with his condition.

Visit rarediseaseday.us to get more information on #ShowYourStripes, download media outreach materials and stay abreast of Rare Disease Day virtual events in the U.S.

Written by

Allsup