Research Resources

iStock_000017157664XSmallInternational LGDA Registry for Lymphatic Malformations

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 collects and analyzes 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.

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Research Partners and Initiatives

The Lymphangiomatosis & Gorham’s Disease Alliance works closely with the Lymphatic Malformation Institute (LMI) to promote and fund research and is the sponsor of the International LGDA Registry for Lymphatic Malformations, which collects medical and demographic information about patients with lymphangiomatosis and Gorham’s disease, as well as other lymphatic malformations and osteolytic bone diseases.


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Publications and Conference Reports

Compilation of publications from a variety of professional and peer-reviewed sources, including key publications related to conferences and projects supported by the LGDA and its research partner, the Lymphatic Malformation Institute.

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