The image is of an article that appeared in the local newspaper where the van der Velden family lives in The Netherlands. The family is hosting an event in conjunction with the first World #LGDAwareness Day on May 26, 2017. Below the image is a translation of the text. Family ...
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ATS 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 ...
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NORD to Present Awards at “Portraits of Courage” Celebration, May 8, 2014, in Washington DC Rare disease patients, patient advocates, two members of Congress and companies that have brought novel new therapies to patients will be honored at the “Portraits of Courage Celebration” of the National Organization for Rare Disorders ...
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In early April 2013 the Lymphangiomatosis & Gorham's Disease Alliance (LGDA) was contacted by Dr. Mishy Lesser, a Boston-based educator, seeking assistance for a child in the Amazon jungle region of Ecuador. Dr. Lesser had just received an urgent plea for help from a former student, Ladio Dominguez, who resides in ...
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5K/Run-Walk Marks the Battle of Young Girl Folks in the community of Orrick, Missouri, got together a few months ago and decided to do something  to give support and hope to a young girl in town,  Maci Jeffries.   Maci is 11 years old and has been struck with Gorham's disease,  ...
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Alfie Milne's parents, Mark and Tracy Milne, generously shared his story on our website earlier this year. At the time Alfie had been on Rapamune/sirolimus for a few months and had just received his walking frame. Now, Alfie has been on the drug for almost a year, since September 2011, ...
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