DESSH Clinic and Family Conference

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 seeking expert medical advice, looking to contribute to groundbreaking research, or hoping to connect with others on a similar journey, the DESSH Clinic & Family Conference welcomes you. Together, we strive to illuminate the path forward for all those impacted by DeSanto-Shinawi Syndrome.