For Patients & Families


 

ATS-PAR Meet the Expert – San Diego

If you're in the San Diego area Saturday, May 17, 2014, make plans to stop by the International Conference of the American Thoracic Society and visit with representatives of the Lymphangiomatosis & Gorham's Disease Alliance at its booth on PAR Row. This year’s event will focus on “Living Your Best Life with ...
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Meeting Report

1st International Conference on Generalized Lymphatic Anomaly (lymphangiomatosis) and Gorham-Stout Syndrome The Lymphangiomatosis and Gorham's Disease Alliance (LGDA) and the Lymphatic Malformation Institute (LMI) are pleased to share the publication of the Conference Report on the Proceedings of the First International Conference on Generalized Lymphatic Anomaly (lymphangiomatosis) and Gorham-Stout Syndrome ...
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Celebration of Robin Brown

Five years ago I thought I was fighting an orphan disease on my own. Then I found an internet page about a little boy named Marcus that had passed away from the disease known as lymphangiomatosis. Then Marcus’s website led me to a website a couple years later that would ...
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LGDA @ ATS International Conference

The American Thoracic Society International Conference - Meet the Experts session in Philadelphia on Saturday, May 18, 2013, was a great success for the lymphangiomatosis and Gorham’s disease community. In attendance were 3 patients, 4 parents of patients, 2 spouses of patients, 1 friend of a patient, and 3 physicians ...
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Diffuse Pulmonary Lymphangiomatosis Clinics

A Partnership with LAM One of the most difficult manifestations of lymphangiomatosis and Gorham’s disease to diagnose and manage is diffuse pulmonary lymphangiomatosis (DPL).  This manifestation involves the lymphatic system throughout the patient’s chest and has numerous clinical presentations.  DPL often is a slowly progressing lung disease that can lead ...
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ATS-PAR Meet the Expert 2013 – Philadelphia

As a member of the American Thoracic Society Public Advisory Roundtable, the Lymphangiomatosis & Gorham's Disease Alliance (LGDA) is pleased to invite you to participate in the Patient-and-Family Forum, Saturday, May 18, 2013, during the International Conference of the American Thoracic Society at the Loews Philadelphia Hotel in Pennsylvania. For the ...
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