Achievements

Research Planning Meeting
Bethesda June 4th - 5th, 2010

The first meeting ever gathering together professionals with knowledge of and interest in patients diagnosed with lymphangiomatosis or Gorham’s disease was organized by the LGD Alliance on 4th - 5th of June 2010 in Bethesda, United States.

Over 15 researcher and clinicians, spent hours discussing the current state of diagnosis and treatment of lymphangiomatosis and Gorham's disease and the implications for the future of research, diagnosis, and treatment. Experts came from Europe as well as the United States to hear and discuss over several presentations on the current understanding of the lymphatic system, Lymphangiogenesis, the pathology and radiology of lymphangiomatosis and Gorham’s disease, and clinical experiences and treatment modalities. A uniform international Patient Registry was brought up as an important step towards more consistent research, but the most urgent next step was considered to be consensus on the definition and nomenclature of lymphangiomatosis and Gorham’s disease in order to reach better understanding.

The meeting was a success in the aim of forming a research platform and initiating coordinated study on all the aspects of these diseases with the aim of better treatment modalities.