Welcome - Lymphangiomatosis and Gorham's Disease (LGD) Community

What is Lymphangiomatosis and Gorham's Disease (LGD) ?

Lymphangiomatosis and Gorham’s Disease are rare lymphatic malformations affecting organs and bones also known as GLA (Generalized Lymphatic Anomalies) and GSD (Gorham-Stout Disease). GSD is a rare musculoskeletal condition in which spontaneous, progressive resorption of the bone occurs. In medical terminology lymphangiomatosis means: lymphatic system (lymph) vessel (angi) tumor or cyst (oma) condition (tosis). Kaposiform lymphangiomatosis is distinctive from GLA with abnormal spindle-shaped lymphatic cells.There is no standard definition describing this disease that has been agreed to by the medical/scientific community.

Lymphangiomatosis and Gorham's Disease (LGD) Resources

More members stories

Latest Member Stories

Alfie's story

by RareConnect team published about 1 month ago
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Alfie was born on 10th June 2007, weighing a healthy 8lbs 9oz. He seemed like any other child for the first 8 months and then one day, almost overn...

1st Patient and Family Conference LGDA Europe

by RareConnect team published 2 months ago
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A little less than a month ago the LGDA Europe held its first meeting in Leusden, the Netherlands.

A total of 11 patients and 31 family members ...

Partners and Patient Groups

RareConnect is a patient-led initiative. Patient organisations partner with EURORDIS, itself an international patient organisation, to create communities and provide moderators from within their network. The following patient groups are official partners of this community.