Report of Facing Heterotaxy Together 2024: A Virtual, Multidisciplinary Scientific Conference.

Abstract

Heterotaxy is a rare condition involving abnormal arrangement of organs across the left-right axis of the body. It is associated with variable morphological and functional impairments of multiple organ systems and significant morbidity and mortality. Optimal patient care and innovative research require consistent definitions, standardized multidisciplinary practice guidelines, local clinical champions, and a centralized national registry. The Heterotaxy Research and Clinical Care Collaborative and Heterotaxy Connection conducted a virtual scientific conference for expert clinicians, scientists, patients, and families, to discuss state-of-the-art knowledge and establish networks to promote and improve heterotaxy research and clinical care.