Usher Syndrome Awareness Day

Usher Syndrome Awareness Day is globally recognized on the third Saturday of September. The Usher Syndrome Coalition first declared this day in 2015 to raise awareness of this rare genetic disease, which is responsible for approximately 50% of all inherited combined deaf-blind cases.

The third Saturday of September was specifically chosen due to its proximity to the fall equinox. This transition from longer days filled with light to longer nights filled with darkness serves as a poignant symbol of the key challenges individuals affected by Usher syndrome face.

As part of its awareness campaign, the Usher Syndrome Coalition has created various ways to get involved and make an impact, including advocacy, fundraisers, and volunteer opportunities.