Doctor with Patients


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, click below and complete our form.



Opportunities exist to advance our knowledge and understanding of DeSanto-Shinawi Syndrome. The lab at Washington University is collecting data for their research and The DESSH Foundation supports their work. We have created a form for patients to seamlessly share their information with these researchers. We hope you will consider contributing by providing your patient medical information.

A guide for DESSH families

Dr. Amanda Smith, a member of The DESSH Foundation's Medical Advisory Board and researcher at Washington University, authored this guide with helpful information about how patient data is used in clinical and pre-clinical research.

A consent to release your medical information

Should you wish to share your information with the researchers at Washington University it is imperative that you sign and attach this consent to our electronic medical information form (above).

A consent to release your photos/videos

Because a feature of DeSanto-Shinawi Syndrome is facial dysmorphisms, photos are beneficial to the research team. Should you choose to upload photos to the electronic patient form above, a signed media release form must accompany them.