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, and is doing remarkably well. “The change in his health
» Read moreDr. Denise Adams, Recipient of the LGDA’s Founder’s Award The Lymphangiomatosis & Gorham’s Disease Alliance (LGDA) is pleased to announce that it made its 2nd Founder’s Award to Denise Adams, MD, Professor, UC Department of Pediatrics, Fellowship Director, Division of Hematology/Oncology, Medical Director, Comprehensive Hemangioma and Vascular Malformation Clinic, Cincinnati Children’s Hospital Medical Center. Jack Kelly, president of the LGDA,
» Read moreEach year at the International Conference of the American Thoracic Society, the Public Advisory Roundtable hosts a day-long Patient-Family Forum where patients with chronic lung diseases and their families can share experiences with pulmonary doctors and one another, learn about how to manage their symptoms, and the latest in research and treatment for a variety of diseases. At the 2012
» Read moreAmerican 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 history in public service, innovative spirit, and outstanding leadership skills.
» Read moreWashington 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 Resolution (H.R.) 4132, the bi-partisan bill known as the Faster
» Read moreAs 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 and Gorham’s disease will be featured at the Forum. During
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