When is Bohring-opitz Syndrome (bos) Awareness Day?

Thursday April 6th

Each year, Bohring-Opitz Syndrome (BOS) Awareness Day takes place on April 6th. The primary goal of the day is to inform both the public and the medical community about the condition, as well as families of those with BOS.

Bohring-Opitz Syndrome Awareness Day - April 6

Bohring-Opitz Syndrome is a rare genetic disorder. It is extremely uncommon. Around 150-200 cases have been reported around the world. This syndrome is confirmed by genetic testing, and it is caused by a mutation in the ASXL1 gene. Respiratory infections are the leading cause of death. BOS children can have feeding difficulties, persistent respiratory infections, sleep apnea, developmental delay, failure to thrive, stunted hair growth, abnormal hair length, and silent aspiration are all typical problems for children with BOS.

How to celebrate #bohringopitzsyndromawarenessday on a day that is #bohringopitzsyndromawareness