LGDA Mission


 

LGDA to Participate in Trans-NIH Lymphatic Coordinating Committee (TNLCC)

The Lymphangiomatosis & Gorham’s Disease Alliance (LGDA) has been invited as the newest guest organization of the Trans-NIH Lymphatic Coordinating Committee (TNLCC). Dr. Michael Kelly, the Chief Medical Officer will represent the LGDA and our patient community in meetings with this important research committee. In 2002, the Trans-NIH Lymphatic Coordinating ...
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2018 LGDA Patient and Family Conference Report

Over the last weekend of July 2018, the LGDA hosted its second International Patient and Family Conference in Dallas, Texas. Since its founding in 2007, the LGDA has had as a primary goal to bring together patients and their families, clinicians, and researchers to share experiences and knowledge that will ...
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LGDA Awards 5th Founder’s Award

The Board of Directors of the Lymphangiomatosis & Gorham's Disease Alliance (LGDA) is quite pleased to announce that Judith Margolin, MD, is the 2017-2018 recipient of its special biennial Founder's Award. Dr. Margolin is a pediatric hematologist-oncologist in Houston, on staff at Texas Children's Hospital.  She received her medical degree ...
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LGDA Represented at Rare Diseases Day 2018

On February 24, 2018, Texas Children's Hospital hosted an event at The Health Museum in Houston, raising awareness for rare diseases in observance of the upcoming Rare Disease Day. The LGDA was one of 35 rare disease advocacy organizations represented at the event. Medical Director of the Vascular Anomaly Center ...
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LGDA Hosts First Non-Event Fundraiser

You read that correctly. Our Non-Event is guaranteed to please everyone everywhere because you’re doing whatever you want, which may or may not include absolutely nothing. We’re not holding an event. We’re not booking a hall, picking a menu, hiring entertainment, scheduling activities, twisting arms to get volunteers, hoping for ...
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#LGDAwarenessDay Event in the Netherlands

On May 26, 2017, the Van der Velden family hosted their first #LGDAwarenessDay at their home in Dordrecht, the Netherlands; fifteen-year-old Ella van der Velden has lymphangiomatosis. To raise awareness for this disease and Gorham-Stout disease (GSD), the family invited people by social media, email and the local newspaper to ...
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