First International Conference on Generalized Lymphatic Anomaly and Gorham–Stout Syndrome

Abstract

Gorham–Stout syndrome (GSS) is a rare disease of unknown etiology characterized by intraosseous lymphatic vessels and massive osteolysis. Generalized Lymphatic Anomaly (GLA, also known as lymphangiomatosis) is a related disease that features an increase in the number of lymphatic vessels in affected tissues and commonly affects bones. Unfortunately, patients with these disabling, deforming, and sometimes life-threatening diseases have limited therapeutic options. To address this urgent medical need, the Lymphatic Malformation Institute (LMI) and Lymphangiomatosis & Gorham’s Disease Alliance (LGDA) sponsored the 1st International Conference on Generalized Lymphatic Anomaly and Gorham–Stout Syndrome. This inaugural conference was held from 7–8 June 2013 in Bethesda, MD, and was chaired by Drs Bjorn Olsen and Michael Dellinger. Participants of the meeting included 20 invited speakers from seven different countries, 34 additional scientists and clinicians and several representatives from the LMI and LGDA. The objectives of the conference were (1) to bring together leaders in bone and endothelial cell biology to discuss the latest advances in basic science and clinical research relating to GLA and GSS; (2) to identify and develop new avenues of research; and (3) to foster collaboration among investigators studying these rare diseases. The highlights of this exciting conference are presented in this meeting report.