NORD Issues New Rare Disease Day® Rallying Cry: Show Your Stripes™!

The zebra is the official symbol of rare diseases in the United States, and is noted for its black and white stripes, which are central to its uniqueness. Everyone has his/her own stripes, those characteristics that make each individual distinct. While each of the more than 7,000 rare diseases are unique, there are many commonalities that unite the rare disease community.

The National Organization for Rare Disorders (NORD)®, the leading independent nonprofit organization representing the 25-30 million Americans living with rare diseases, has announced a new campaign for Rare Disease Day® centering 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®, which will be observed on February 28th in 2019. In the spirit of raising awareness regarding rare disease issues and celebrating Rare Disease Day, this year NORD will promote specific ways that individuals, organizations and groups can show their stripes. NORD will:

• Ask everyone to wear stripes on Rare Disease Day® to show solidarity in rare disease awareness and education, and to share that message.

• Launch a Show Your Stripes™ challenge, in which the general public will be dared 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 trains).

• Collect and share photos, stories and videos of individuals and their colleagues, friends and families all wearing their stripes together on social media using the hashtags #showyourstripes and #rarediseaseday.

• Provide a Show Your Stripes™ social media profile frame, as well as stickers, signage and other materials that can be downloaded and printed.

• Encourage the hosting of events (virtual or live) in local communities to bolster interest and knowledge for the rare disease cause.

2018 Rare Disease Day at NIH Event Video is Now Available

On March 1, 2018 “Rare Disease Day at NIH” convened at the National Institutes of Health in Bethesda, Maryland. Rare Disease Day takes place worldwide, typically on or near the last day of February each year, to raise awareness among policymakers and the public about rare diseases and their impact on patients’ lives. The theme for Rare Disease Day 2018 was research, and the slogan was “Patients are not only subjects but also proactive actors in research.” Free and open to the public, the all-day event at NIH was sponsored by the National Center for Advancing Translational Sciences (NCATS) and the NIH Clinical Center. It featured podium presentations, posters, exhibits, an art show, and tours of the NIH Clinical Center. Among the presenters was Chester B. Whitley, PhD, MD, the Principal Investigator of the Lysosomal Disease Network. The presentations were live-streamed on March 1, and are now available as online video. Dr. Whitley’s portion of the presentations begins at 1 hour 12 minutes into the video. The entire event video provides a valuable opportunity to increase one’s knowledge of rare diseases and their impact upon individuals and their communities. It also provides insights into the current state-of-the-art in rare diseases research and treatment.