Okur–Chung Neurodevelopmental Syndrome: Progress and priorities from the 2025 Connect & Collaborate Conference

The 2025 Connect & Collaborate Okur–Chung Neurodevelopmental Syndrome (OCNDS) Scientific and Family Conference convened researchers, clinicians, and families to accelerate discovery and translation of research for OCNDS. OCNDS is an ultra-rare disorder caused by pathogenic variants in the CSNK2A1 gene. Nearly 200 participants joined the 4-day event featuring 17 scientific talks, 15 family sessions, and multiple roundtables integrating patient and researcher perspectives. Scientific sessions covered CK2 biology, variant functional studies, model organism pipelines, and early therapeutic exploration. Family sessions emphasized speech and language outcomes, sleep and behavioral challenges, and barriers to clinical care. Crowdsourced researcher-family dialogues identified shared priorities for the next research phase, including developing measurable clinical endpoints, expanding biobanking and variant data infrastructure, and focusing on translational models to enable preclinical testing. These priorities will steer the next several years of OCNDS research and collaboration, driving coordinated advances toward clinical translation.