Rare Disease Day
Zebras were spotted on Rare Disease Day 2022
Our NBIA families showed off their unique zebra stripes by wearing T-shirts we designed and sold for Rare Disease Day, Feb. 28. In addition, families and supporters donated online, contributing to the overall $7,000 that was raised to support our organization’s mission.
Zebras represent rare diseases because of a common saying in medicine: “When you hear the sound of hooves, think horses not zebras.” In other words, think of the common diagnosis, not the rare, exotic one. The rare disease community thinks of its loved ones as zebras to embrace and cherish their individuality.
NBIA Disorders Association Vice President Amber Denton, says that Rare Disease Day is a way to “come together and raise awareness for our small but mighty community,” and “to make ourselves known and our voices heard from all over the world.”
Families submitted photos of their loved ones for ‘rare zebra spotting’ posts on our social media platforms.
EURORDIS, the umbrella organization representing rare diseases in Europe founded Rare Disease Day in 2008. They, celebrated this year with a globally streamed event in Dubai as well as a conference in Paris to address European regulations regarding rare diseases.
EURORDIS and the National Organization for Rare Diseases (NORD) take the lead in promoting activities in Europe, the United States and other countries every year. This year, NORD held an online community gathering for rare disease families to connect and celebrate together as well as the popular “Light Up for Rare” program in which buildings are lit up in Rare Disease Day colors on Feb. 28.
Thanks to everyone who had a hand in helping our organization celebrate the event this year.
NBIA Disorders Association wins top prize in 2021 Rare Disease Day contest
The NBIA Disorders Association was a grand prize winner in the National Organization for Rare Disorders (NORD) 2021 Rare Disease Day contest. The top prize was a $500 Amazon gift card and the opportunity to engage a NORD representative as a speaker at one of our upcoming virtual events this year.
Our video had over 15,000 views, 348 Facebook shares and 1052 likes and comments. NORD’s membership manager, Ashanthi Di Silva, said, “ We were honored to have so many thoughtful and inspiring submissions, and your video submission was definitely a highlight for our team and the rare disease community. We appreciate the time and effort you took to create something so visually engaging and meaningful. Thank you for all you’re doing to raise awareness and fight for rare diseases.”
Kudos to our social media director, Jenny Wildvank, for creating the video.
