Langerhans Cell Histiocytosis

Objective
Developing an international adult dataset in Langerhans Cell Histiocytosis (LCH) with a special interest in bone and pituitary lesions.

Summary
LCH is a type of blood cancer marked by the build up of immune cells called Langerhans cells. It can impact nearly any organ, with bones, lungs, skin, and the pituitary glad being the most frequent sites in adults. Each patient is affected differently. While there is no definitive cure, treatment options include watchful waiting, chemotherapy, and medications targeting specific mutations. An international platform is needed to help gather information for the course of the disease among adults over time, especially in bones and pituitary, and to asses the effectiveness and safety of drugs used in these patients.

Working Group Members