The DESSH Foundation has been actively advancing its mission since its founding in 2019—championing research, building community, and advocating for individuals and families affected by DeSanto–Shinawi syndrome (DESSH). As a patient advocacy organization, our work is grounded in three core priorities: accelerating responsible research, strengthening connections across our global community, and increasing awareness and understanding of this ultra-rare genetic condition. DeSant

The DESSH Foundation, Mayo Clinic, and Rare People – The Research Charity have a brief update for the DESSH community regarding the repurposed drug research study at the Mayo Clinic. The DESSH Foundation remains in regular communication with the team at Mayo Clinic as the study moves forward. The study recently received funding from Cures Within Reach, which you can read more about here: https://www.cureswithinreach.org/2026/02/25/press-release-cures-within-reach-selected-thr

To learn more, read the below note from the Founder and Chair of Trustees, Rob Galloway.

Original story can be found at First-ever DESSH clinic (wustl.edu).

You may find the answer to this question is an obvious one: to advance science in order to cure DeSanto-Shinawi Syndrome. On the other...

The DESSH Foundation is proud to announce it will create a team of DESSH parents to pursue the second cycle of the Chan Zuckerberg...