Both lymphangiomatosis and Gorham’s disease are extremely poorly-understood and poorly-studied conditions. They are considered to be closely related, or even different presentations of the same disease. However, the clinical course, manifestations and complications of these diseases are extremely varied and not comprehensively understood. There have not been any complete, scientifically sound and validated studies done on these diseases. The best efforts so far have been on case reports providing details of a few cases, which does not always do much to illuminate the cause of these diseases or the most effective treatment for individual patients. As a result there is a tremendous need for effective research to understand and verify the origins of these diseases in order to find treatments and ultimately a cure.
As with many rare diseases, the study of lymphangiomatosis and Gorham’s disease is challenging for researchers and clinicians. Patient samples are not readily available for study, and the basic materials of research such as cell lines and animal models have not been developed for these diseases. It is not easy to find adequate numbers of patients for reliable clinical trials. An additional obstacle for research into these conditions is their multisystem nature, where nearly all organs of the body may be affected. Therefore, for a complete understanding of these diseases, clinicians and academics from various fields must be involved.
LGD Alliance - Europe, side by side with the LGD Alliance, aims to support professionals in overcoming these obstacles and initiate and facilitate research into lymphangiomatosis and Gorham’s disease. The first steps toward better understanding have been taken, and we hope we may soon be able to inform you about our first research projects to be initiated on these diseases.