Rare Disease Day with DESSH

February 28, 2022 @ 12:00AM — 11:55PM 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.

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Rare Disease Day is an international patient-driven awareness day held every year on the last day of February. Like last year, we ask you to shine the light of awareness on DESSH by prominently displaying our 2022 ribbon on your mailbox or front door for rare disease day. Place your order now to ensure arrival by February 28th!

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 150 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.