Living with Lymphangiomatosis & Gorham’s Disease

Rare Disease Day in Scotland

Alfie Milne Lymphangiomatosis Trust founder Tracy Milne, was asked to speak about her experience in parenting a child with a rare disease at an event in Aberdeen, Scotland, on Rare Disease Day 2017. She has very graciously given permission for us to share the remarks she made at that event: ...
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Rare Disease Day Event

LGDA President Jack Kelly to speak at Rare Disease Day Event The LGDA and other advocates have joined with the National Organization for Rare Disorders (NORD) to sponsor a Statehouse Event dedicated to educating and informing the public, elected officials, legislative staff and the media: Georgia Rare Disease Day State ...
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Warrior Featured in ATS Publication

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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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 ...
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National Organization for Rare Disorders to Honor LGDA Patient and Mother

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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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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