Rare Disease Day
Rare Disease Day Highlights NBIA Zebras
By: Jennifer Wildvank
NBIA Disorders Association joined the global movement to celebrate Rare Disease Day on February 29, aiming to raise awareness for all NBIA Disorders. Through apparel sales, rare zebra sightings, and infographic posts on social media, we raised over $11,000 for family support initiatives and achieved record highs for social media awareness.
Each year, individuals, communities, and advocacy groups unite to educate policymakers and the public about rare disorders and their impact on patients and their families. Rare Disease Day in the U.S. is sponsored by the National Organization for Rare Diseases (NORD), actively promoting the event and sharing ideas for marking the occasion.
The zebra is widely adopted as a symbol for rare disease groups. This choice is inspired by Dr. Theodore Woodward's famous metaphor ('think horses, not zebras') urging healthcare professionals to focus on common diagnoses. Despite their rarity, rare diseases collectively affect about 1 in 10 people, with over 7,000 known disorders. This underscores the importance of considering common and rare conditions in medical evaluations, represented metaphorically by 'horses' and 'zebras.'
For this year's Rare Disease Day, the NBIA Disorders brought back their popular “zebra sightings” beginning February 1, inviting NBIA families to share all about their rare “zebras,” including where they are often spotted, where they like to migrate, and their favorite foods and hobbies. We also honored and shared details about our NBIA zebras, which are no longer with us. Over 50 entries and photos were submitted, and our social media feed was filled with clever, funny, and sweet bios of our beautiful zebras and the opportunity to donate to each post.
To raise awareness for each NBIA subtype, we shared infographics translated into Spanish for broader accessibility. Our infographics reached over 9,000 people on Facebook and Instagram. By combining zebra sightings and infographics, our social media outreach soared to new heights: Facebook interactions increased by 434%, reaching 35.2 thousand people, and Instagram increased by 271%, reaching 1.4 thousand people. Our efforts also led to a gain of 118 new followers.
Additionally, we featured new apparel showcasing the theme “Care for Rare” provided by long-time partner 4Gen Digital. We also formed a new partnership with Embrace Our Souls to offer custom bracelets. The demand was higher than ever, and 144 shirts and 45 bracelets were sold.
Our community involvement in Rare Disease Day 2024 was truly inspiring. The overwhelming support on social media was heartwarming. We extend our gratitude to everyone who contributed, whether by liking a post, sharing a zebra sighting, purchasing merchandise, or sharing their NBIA journey. Your participation made a difference, and our message was heard across the globe.
Our organization marks Rare Disease Day 2023 and attracts more than $5,000 in donations
The NBIA Disorders Association once again joined the global movement to celebrate Rare Disease Day on Feb. 28 by spreading awareness for all NBIA disorders and raising over $5,000 for our family support efforts.
Each year, individuals, communities and advocacy groups combine forces to educate policymakers and the public about rare disorders and the impact they have on patients and their families. Rare Disease Day in the U.S. is sponsored by the National Organization for Rare Diseases (NORD), which shares activities and ideas for marking the day.
Many rare disease organizations and advocacy groups use the zebra to symbolize their uniqueness. Medical students are taught that when they “hear the sound of hooves, think horses.” Rarely do the hooves indicate a zebra—unless the person they are trying to diagnose has a rare disorder. Rare disease organizations want doctors and communities to recognize the zebras among them.
To that end, the NBIA Disorders Association embraces our zebra community each Rare Disease Day. This year we “showed our colors” by printing zebra coloring pages and sharing them on social media for all to see. Some of our artwork can be seen here. We also sold over 120 RARE zebra print shirts with our NBIA colors proudly displayed. They were a big hit within our community.
In addition to our zebra festivities, we focused on a central part of our mission, educating the public. We posted informational graphics with fast facts about all 10 NBIA subtypes on Facebook and Instagram. This increased our social media outreach by over 200% in February.
We are grateful to all who participated in our Rare Disease Day activities on social media or in their communities.
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.
