Rare Disease Day with DESSH

February 28, 2021 @ 12:00AM — 11:59PM Eastern Time (US & Canada)

Rare Disease Day is February 28th and we want to celebrate! Join the DESSH family by hanging a ribbon on your mailbox, front door, or wherever you'd like to make a statement and help us spread awareness for DeSanto-Shinawi Syndrome!

Rare Disease Day with DESSH image

Celebrate Rare Disease Day with DESSH!

There are currently no tickets available for this event, but you can still make a donation.


DeSanto Shinawi Syndrome is a rare and newly discovered genetic disorder characterized by a mutation of the WAC gene. It has been identified in less than 100 people worldwide. Patients are most often diagnosed as children and are challenged with global development delay, hypotonia, intellectual disability, autism or autistic features, vision impairments, and seizures.