2026 DESSH Clinic and Family Conference
Wed, Sep 16
|St. Louis
Advancing Research & Empowering Families Together
Time & Location
Sep 16, 2026, 9:00 AM CDT – Sep 18, 2026, 4:00 PM CDT
St. Louis, One Children's Pl, St. Louis, MO 63110, USA
About the event
Welcome to the DESSH Clinic & Family Conference
The DESSH Clinic & Family Conference is a unique annual event dedicated to individuals and families affected by DeSanto-Shinawi Syndrome (DESSH), a rare neurodevelopmental disorder caused by mutations in the WAC gene. This gathering combines expert clinical care, collaborative research, and community support to advance understanding and management of DESSH.
Our Mission
Our primary goal is to collect longitudinal patient data to study the progression of DeSanto-Shinawi Syndrome. By gathering comprehensive clinical information over time, we aim to enhance research efforts and develop targeted treatments for DESSH.
What to Expect
Comprehensive Clinical Appointments. Participants have the opportunity to engage in one-on-one consultations with leading experts in DESSH from Washington University School of Medicine and St. Louis Children's Hospital. These sessions focus on personalized care and contribute valuable data to our ongoing research.
Educational Symposium. The conference features presentations and discussions on symptom management, rare disease research, and caregiver support. Attendees gain insights into the latest developments and strategies for living with DESSH.
Community Building. Families and individuals affected by DESSH can connect, share experiences, and build lasting relationships. This supportive environment fosters a sense of community and shared purpose.
Join Us
Whether you're coming for expert medical care, participating in research, or connecting with other families who understand this journey, the DESSH Clinic & Family Conference is designed with you in mind.
You’ll meet with specialists, learn from researchers, and spend time with a community that shares your experience—all working together to better understand DESSH and move toward meaningful treatments.
Agenda (more details to follow)
Day One - Family Conference
St. Louis Zoo
McDonnell Center at River Camp
Lunch Provided
Day Two - Clinic Appointments
St. Louis Children's Hospital
PCRU, 11th Floor
Lunch Provided
Evening Outing for Families
Day Three - Clinic Appointments
St. Louis Children's Hospital
PCRU, 11th Floor
Lunch Provided
Presentation topics, activities, and other gatherings coming soon!
Tickets
Family (Clinic and Conference)
Includes clinic participation for one patient and conference access for immediate family members. One registration per family. Please note: Clinic participation is limited to 30 patients. If demand exceeds capacity, participation will be confirmed.
$250.00
+$6.25 ticket service fee
Goes on sale
Apr 30, 12:00 AM CDT
Conference Only - Adult
Conference access only. Does not include clinic participation.
$75.00
+$1.88 ticket service fee
Goes on sale
Apr 30, 12:00 AM CDT
Conference Only - Child
Conference access only for children under 12. Does not include clinic participation.
$35.00
+$0.88 ticket service fee
Goes on sale
Apr 30, 12:00 AM CDT