Welcome to the DESSH community

As a community of parents, those living with DESSH and their siblings, friends and caregivers, we are uniquely bound together by a common thread. We are strengthened by our mutual experiences and the shared pursuit of solutions to the challenges inherent in WAC gene related disorders. 

To join the community and keep up to date with research and news, please complete the following patient form.


+1 (718) 406-3842

3 Higgins Drive
Vernon, NJ 07462

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DESSH DeSanto-Shinawi Syndrome Corporation is recognized by the IRS as a 501(c)(3) tax-exempt public charity.