Category Archives: Previous Events

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 help to improve understanding of generalized lymphatic anomaly (GLA), formerly

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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 visit from 1-6pm. The family spoke with visitors at a

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Rare Lung Disease Week II – View Recorded Webinar

  As part of “Rare Lung Disease Week at the ATS” and in conjunction with PAR partner the Lymphangiomtosis & Gorham’s Disease Alliance, the ATS PAR presented a live webinar on Wednesday, August 5, 2015. If you were unable to join the webinar, it was recorded and can be viewed by clicking here. The topic will be Pulmonary Lymphangiomatosis: Clinical

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Patient & Family Conference

With the registration at capacity, more than 110 patients and family members turned out for the very first Lymphangiomatosis & Gorham’s Disease Alliance Patient & Family Conference, held in Dallas, Texas, June 14-15, 2014. Attendees, including more than two dozen children, came from Europe, South America, and the United States and Canada. Five families attended who had lost a family

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