Welcome to Summit 2025!

Today we kick off an inspiring week in Chicago/Oak Brook, IL with our Scientific Summit, bringing together a global network of researchers and clinicians working to advance understanding and treatment of Koolen-de Vries Syndrome.

Throughout the day, invited experts will share cutting-edge insights on:

Clinical characterization across the lifespan

Communication, cognition & neurobehavioral profiles

Basic research & disease modeling

Biomarker discovery

Emerging therapeutic strategies

This dedicated day of science will include live panels, Q&A sessions, and a roundtable discussion focused on future directions—including the path toward clinical trials.

Later today, we look forward to welcoming our families and community members for the official Summit Kick-Off Celebration at 6:30 PM!

Check out this week’s full schedule here