The Lymphangiomatosis and Gorham's Disease Alliance (LGDA) established the International LGDA Registry for Lymphatic Malformations as an internet-based information database for researchers and clinicians, as well as an information network for individuals with lymphangiomatosis and Gorham's disease and their families as a means to achieving its ultimate goal of developing cures for these diseases. The Registry is also open to individuals affected by a number of other lymphatic malformations and osteolytic bone diseases. The registry will collect and analyze information about patients with these conditions in order to expand the basic knowledge about these diseases and their impact on patients and families; assess gaps in service; promote access to care; develop best standards of practice for diagnosis and clinical management; and connect families to research opportunities. The International LGDA Registry for Lymphatic Malformations is a critical part of the LGDA's efforts to raise awareness of these diseases; provide patients and their families with information and a strong support network; and improve the quality of care of individuals with lymphangiomatosis, Gorham's disease, other lymphatic malformations, and osteolytic bone diseases.
Registering with the International LGDA Registry for Lymphatic Malformations and completing a Profile connects you to the latest news and information about your disease, current clinical trials and research studies, and allows you to learn more about the community. Registering also enables us to tell you about upcoming research studies for which you may qualify.