The APBD Research Foundation rallied its community to mark Rare Disease Day on February 28, joining the National Organization for Rare Disorders and rare disease advocates around the world.
In the lead-up to the day, we mailed zebra-striped pins and ribbons to community members and asked them to share their pictures, personal dreams, and why they are committed to raising awareness of APBD. Their heartfelt messages highlighted the hope for treatments and a cure.
Faye Rosenberg, our volunteer for this year’s Rare Disease Day awareness efforts, was inspired by her family’s APBD journey and the memory of her late father, Gregory Weiss, the co-founder of the APBD Research Foundation, Gregory Weiss. Faye shared, “I’m raising awareness because my family has been robbed of too many milestones and memories that could have included my father, had APBD never happened to him.”
Since its inception in 2008, Rare Disease Day has become a cornerstone in building a global, diverse, and multi-disease community that is united by one common goal: to raise awareness and drive change. The day encourages individuals, communities, and companies to show their support by embracing the “Show Your Stripes” campaign, symbolizing the uniqueness of each rare disease journey.
APBD is 1 of 10,000 rare diseases affecting over 30 million (or 1 in 10) people in the US — and 300 million globally. It is also among the 95% of rare diseases that lack FDA-approved treatments.
The zebra is recognized as the official symbol of rare disease because it embodies its uniqueness through its distinctive black and white stripes. Just as zebras’ stripes are never the same, individuals sharing an APBD diagnosis are unique people with wishes, goals, dreams, and plans.
