 The first case of ECD was reported by the American pathologist William Chester in 1930, during his visit to the Austrian pathologist Jakob Erdheim in Vienna.The Erdheim–Chester Disease Global Alliance is a support and advocacy group with the goal of raising awareness of and promoting research into ECD.ECD families and patients are also supported by the Histiocytosis Association, Inc.

ECD patients with significant lung issues, families, and caregivers are encouraged to join the NIH Rare Lung Diseases Consortium Contact Registry.