Awareness News


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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ASBMR 2014 Annual Meeting

As a member of the Rare Bone Disease Patient Network (RBDPN), the Lymphangiomatosis & Gorham's Disease Alliance (LGDA), and associate members of the RBDPN, participated in the National Bone Health Alliance/Rare Bone Disease Patient Network Workshop: Mechanistic and Therapeutic Insights into Skeletal Biology Learned from the Study of Rare Bone ...
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Webinar: Pulmonary Complications of Lymphangiomatosis & Gorham’s

Update: 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 ...
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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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Orphan Drug Heroes

World Orphan Drug Congress USA Heroes Wall For 4 years the World Orphan Drug Congress USA has sought inspiration from rare disease patients to continue with the research and discovery for orphan drugs. This year WODC USA asked rare disease patients and advocacy groups who inspires them and selected the ...
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ATS Hill Day

LGDA Participates in ATS Hill Day 2014 In late March, ATS officers and patient representatives of the Public Advisory Roundtable (PAR), of which the Lymphangiomatosis & Gorham’s Disease Alliance is a member, visited Washington, D.C., to advocate for respiratory health as part of ATS Hill Day 2014. Events like the ...
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