How does your donation help?
The generosity of donors like you has made it possible to make numerous investments in support of research efforts to find the cause, and to develop better diagnostic methods and treatments for lymphangiomatosis and Gorham’s disease.
International LGDA Registry for Lymphatic Malformations
A major project funded by the LGDA is the International LGDA Registry for Lymphatic Malformations. Established in 2012, the LGDA Registry is a secure, encrypted 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.
In 2013 the first international conference on Generalized Lymphatic Anomaly and Gorham-Stout Disease took place.
The second major investment program is underway by the LGDA for implementation in early 2015: the establishment of an agreement with abiorepository firm that will facilitate the collection, storage, and distribution of samples of blood and tissues donated by patients and healthy volunteers necessary for research, to investigators, at no cost to the patient.
Biomarker and bisphosphonates
Planning is underway for new research projects that LGDA must support, including a biomarker study and a study on the effectiveness and long-term use of bisphosphonates. We need your help to support these important research projects.