LGDA @ ATS International Conference
The American Thoracic Society International Conference – Meet the Experts session in Philadelphia on Saturday, May 18, 2013, was a great success for the lymphangiomatosis and Gorham’s disease community. In attendance were 3 patients, 4 parents of patients, 2 spouses of patients, 1 friend of a patient, and 3 physicians (pulmonologist, endocrinologist, and orthopedic surgeon)!
For two and a half hours these patients, parents, and spouses described their life and health challenges and asked lots of questions of the physicians in attendance. Throughout the event the doctors listened with interest as they related their experiences, encouraging them to continue to search for information about their diseases; to tell their stories to help doctors understand their situations so the doctors can be more effective in helping them; and to be proactive in the push for research that will help find the cause of their disease by participating in the soon-to-be-launched International LGDA Patient Registry and by donating tissue for study.
The ATS International Conference is one of the largest gatherings of pulmonary, critical care, and sleep clinicians and researchers in the world. This year’s conference attracted nearly 12,000 attendees. In addition to the “Meet the Expert” session, the LGDA also hosts an information booth at the conference where attendees can learn about the impact of pulmonary involvement in lymphangiomatosis and Gorham’s disease on those afflicted and pick up information packets about these diseases and the LGDA.
As a member of the ATS Public Advisory Roundtable, the LGDA is pleased to participate in this Conference each year in order to bring attention to lymphangiomatosis and Gorham’s disease. One of the most serious manifestations of lymphangiomatosis and Gorham’s disease is lung involvement and because of the LGDA’s membership in the ATS-PAR pulmonologists from around the world are learning about these diseases and how they can affect the lungs.