Foundation News


Up-to-date information on the activities of the Lymphangiomatosis & Gorham’s Disease Alliance, as well as news and events of interest to patients and professionals.



Distinguished Achievement Award

American Thoracic Society - Public Advisory Roundtable Honors Member of LGDA Medical Advisory Council Each year at the International Conference of the American Thoracic Society the Public Advisory Roundtable (ATS-PAR) presents the William J. Martin II Distinguished Achievement Award to a person who exhibits a passion for patients, an impressive ...
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Washington D.C.—Recognizing that many patients either have no treatments available for their rare diseases or are using older therapies not designed for their disease and the need to update the Food and Drug Administrations decades-old Accelerated Approval regulation, Congressmen Cliff Stearns and Edolphus Towns on March 5, 2012, introduced House ...
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You’re Invited! ATS-PAR Patient-Family Forum

As a member of the American Thoracic Society Public Advisory Roundtable, the LGDA is pleased to invite you to participate in the Patient-and-Family Forum, Saturday, May 19, 2012, during the International Conference of the American Thoracic Society at the Marriott Marquis in San Francisco, CA. For the first time lymphangiomatosis ...
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Rare Disease Day 2012

UNIVERSITY OF FLORIDA COLLEGE OF MEDICINE AT SHANDS HOSPITAL HOLDS 2ND ANNUAL RARE DISEASES DAY EVENT The LGDA and the Orthopaedic & Sports Medicine Institute at the University of Florida College of Medicine & Shands Hospital, Gainesville, FL, joined together to organize the 2nd Annual Rare Disease Day event, comprised ...
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1st Annual Golf Outing

KEWASKUM, Wis. (LGDA News) – New friendships were forged, thousands of dollars were raised and a world record was broken at the first LGDA Golf Outing Sept. 24. Proceeds totaling about $18,000 went to the Lymphangiomatosis & Gorham’s Disease Alliance (LGDA) for research of these rare and debilitating diseases. Nearly ...
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Who’s Who at ATS-PAR

Among the several scientific and medical societies and patient advocacy groups with which LGDA is affiliated is the American Thoracic Society through its Public Advisory Roundtable - Council of Public Representatives. LGDA president Jack Kelly and the LGDA were the subject of a feature article, "Who's Who at ATS PAR," on page 4 of the Mar/Apr ...
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2012 News


Archived Newsletters

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1st Edition – Winter 2009