Community Stories in the News

News & Stories

Stories from the DESSH community, media coverage raising awareness, research updates and published studies on DESSH Syndrome, and news from the Foundation.

Members of the DESSH community are helping raise awareness by sharing their experiences with journalists and media outlets.

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Foundation Updates

Announcements and communications from The DESSH Foundation.

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Research & Publications

Updates on scientific progress related to DeSanto-Shinawi syndrome, including newly published research papers, study announcements, and developments from researchers working to better understand DESSH.

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Patient Stories

Families in the DESSH community have shared photos and short introductions to help others learn about the children and individuals living with DeSanto-Shinawi syndrome.

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Share With Us

If you have a media story, research update, or patient story you would like us to consider featuring, please email info@dessh.org with the subject line “News & Stories Submission.”