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
» Read moreATS Patient Voices 3: Their Stories, Their Words, a new ebook release by the American Thoracic Society Public Advisory Roundtable (ATS PAR), features the story of LGDA Warrior Megan Gray’s journey with lymphangiomatosis. Megan’s story will be familiar to many of those diagnosed with lymphangiomatosis and their families; the LGDA is grateful to Megan and her family for sharing it
» Read moreUpdate: If you missed the webinar on August 28, it is available for viewing on the ATS website. August 24 – 30, 2014 For the third consecutive year, Lymphangiomatosis and Gorham’s disease are being featured as part of Rare Lung Disease Week at the ATS. The feature of the week occurs on Thursday, August 28 when the Lymphangiomatosis and
» Read moreWith 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
» Read moreWhen you register a patient in the International LGDA Registry for Lymphatic Malformations you are helping researchers worldwide unlock the mysteries of lymphangiomatosis and Gorham’s disease to find a treatment and a cure!
» Read moreIf 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 Lung Disease” and will be from 10 a.m. to 2
» Read more1st 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. The conference was hosted by the LMI and the LGDA
» Read moreFive 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 change my life. That website was lgdalliance.org. On this website
» Read moreThe 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 (pulmonologist, endocrinologist, and orthopedic surgeon)! For two and a half
» Read moreA 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 to respiratory failure that can occur at any
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