September 16-18, 2026 in St. Louis, MO
2026 Registration Open April 30 - June 15
The DESSH Clinic and Family Conference is a unique, multi-day program that brings together individuals and families affected by DeSanto-Shinawi Syndrome (DESSH), alongside leading clinicians and researchers, for coordinated care, education, and collaboration. Hosted in partnership with Washington University and St. Louis Children’s Hospital, the clinic provides access to specialists who are familiar with DESSH, helping families better understand their diagnosis, address medical and developmental concerns, and receive guidance tailored to their individual needs. Equally important, the conference creates space for families to connect with others navigating similar experiences—building a stronger, more informed, and supported community.
From a research perspective, the clinic plays a critical role in advancing knowledge of this ultra-rare condition. By bringing together a concentrated group of patients, clinicians are able to observe patterns, gather clinical insights, and contribute to ongoing research efforts, including natural history studies and future therapeutic development. The shared experiences and data collected through the clinic help inform priorities for research, improve clinical care approaches, and accelerate progress toward meaningful treatments.
Together, the clinic and conference serve as a bridge between care and discovery—ensuring that patient experiences directly inform the path forward for research and ultimately, better outcomes for the DESSH community.
2026 Schedule At a Glance
Tuesday, September 15th
Welcome Reception
Families are invited to an optional welcome reception to kick off the DESSH Clinic and Family Conference. This informal gathering offers a chance to check in, meet other families, and settle in before the days ahead.
For those attending for the first time, it’s a relaxed opportunity to get oriented and connect with others in the community. Returning families often enjoy reuniting with familiar faces and catching up with friends. Light refreshments or dinner will be provided, with final details to be shared closer to the event.
We hope you’ll join us for this warm and welcoming start to the week.
Wednesday, September 16th
Family Conference at the St. Louis Zoo
Join us for a special DESSH Family Conference set in a fun and unique location—the St. Louis Zoo. Families will have the opportunity to attend informative DESSH presentations while also enjoying time to connect with one another in a relaxed setting. The event includes food and dedicated time to explore the zoo, making it a meaningful and memorable experience for the whole family.
Thursday, September 17th
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Friday, September 18th
Clinic Appointments at St. Louis Children’s Hospital
Families will participate in a day of coordinated clinical and research appointments held within the private research clinic at St. Louis Children’s Hospital. Each appointment is designed to be focused and efficient, and scheduled back-to-back with no more than two appointments each day to ensure a manageable pace for each family.
Lunch is provided.
After a full day of appointments on Thursday, families are invited to unwind together at a casual, fun social outing. Details are still being finalized, but this will be a relaxed opportunity to connect, enjoy time together, and experience a bit of St. Louis as a community. More information will be shared soon!
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