Show Your Stripes on Rare Disease
Show Your Stripes on Rare Disease Day, Feb. 28th
On February 28th, communities and families around the world recognize Rare Disease Day by raising awareness and advocating for issues and policies that impact the Rare Disease community.
A disease or diagnosis is considered RARE if it affects less than 1 in every 2,000 people. Around 300 million people are living with rare diseases worldwide, including 25-30 million Americans. Of over 7,000 identified rare diseases, around 70% are genetic diseases and, in the United States, some 90% lack an FDA-approved treatment option. Some rare diseases are extremely rare and have been diagnosed in only a few dozen, or even, just a handful of people.
Beginning in 2008, members of the Rare community joined together to form a global movement, recognizing Rare Disease Day as a pathway to raise awareness and advocate together on issues that matter. Each year, Rare Disease Day is observed on February 28th — or, on February 29th in Leap Years, the very rarest of days. Learn more at rarediseaseday.org.
In the US, the zebra is recognized as the shared symbol of rare diseases. On Rare Disease Day, the community is encouraged to wear striped clothing and accessories to show support and solidarity for those living with rare diseases.
Want to get involved?
1. Learn more about rare diseases!
- National Organization for Rare Disorders (NORD) — org
- The Rare Disease Database — com/2uczvku4
- RareAction Network — com/3j5n6zee
- RARE Policy Issues State Report Cards — com/3mzamr3k
2. Wear stripes and raise awareness!
Show Your Stripes on February 28th in support of those in our community living with rare diseases. It is also a great way to start a conversation and educate others about rare diseases. Snap a picture to show off your stripes and post to social media with hashtags: #RareDiseaseDay and #ShowYourStripes.
3. Become an ally!
Educate yourself on the issues and policy priorities important to the Rare Disease community and sign up to receive notifications from RareAction Network about pending legislation and action alerts.
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Whitney Stohr is a Parent to Parent Coordinator at The Arc of Snohomish County. She is passionate about advocating for medically complex children and children with disabilities and their families. She is a mom and medical caregiver herself, who is energized by working closely with other parent/family caregivers. She lives with her four-year-old son Malachi and husband Jason in Lynnwood. Connect with her on Instagram @rollin.w.spinabifida. Contact: whitney@arcsno.org.