Worldwide
Bohring-Opitz Syndrome Day
Gold and denim for the rarest among us.
When is Bohring-Opitz Syndrome Day?
Every year on April 6.
What is Bohring-Opitz Syndrome Day?
Bohring-Opitz Syndrome Day, observed each April 6, raises awareness of the ultra-rare genetic condition caused by truncating variants in the ASXL1 gene — a chromatin regulator whose disruption reshapes development in ways that affect nearly every system in the body. Children with BOS often have distinctive facial features, joint stiffness in the arms, a small head, feeding difficulties, sleep apnea, frequent lung infections, and an increased risk of Wilms tumor. The day is rooted in a 2011 Facebook support group started by Sünne van Gemert-Godbersen and marked since 2015 under the leadership of Taylor Gurganus and other parents. Gold and denim — the BOS ribbon colors — are worn to spark conversation; small fundraisers and registry drives push research forward; and families find each other in a community that, before 2011, did not really exist.
How to celebrate
Mark the day with a poster made in Dayfeed — pick your favourite photo as the background, share it to your story or group chat, and set a reminder so you never miss it next year.
Hashtags
- #BOSDay
- #BohringOpitzSyndrome
- #RareDisease
- #GoldAndDenim
Try it: save this day's poster to your Pinterest board.
This is the Bohring-Opitz Syndrome Day poster, made with Dayfeed. Pin it to your board — no app needed.
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