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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.

 

 


Remembering Jack Klugman

The Lymphangiomatosis and Gorham's Disease Alliance was saddened to hear of the death last week of actor Jack Klugman. Best known as curmudgeon Oscar Madison on the 1970's television show The Odd Couple, Mr. Klugman was an early advocate for rare diseases, supporting the patient advocates who were trying to ...
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Rare Bone Disease Research Summit – Johns Hopkins University

The Lymphangiomatosis and Gorham's Disease Alliance (LGDA), and our research partner, the Lymphatic Malformation Institute (LMI), were among co-sponsors of the Rare Bone Disease Research Summit held recently at the Johns Hopkins University Medical Center in Baltimore. Gathered at the summit were some one hundred bone scientists, clinical researchers, oncologists, ...
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Warrior Alfie Starts to School

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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Hagerstown Family Shares Story of Daughter’s Battle with Lympangiomatosis

By MARIE GILBERT marieg@herald-mail.com 3:32 p.m. EDT, August 18, 2012* Most days, Alli Rogers is in pain. This is the reality of the young woman’s life as she battles a rare disease — one for which there is no cure. She has been in and out of hospitals, has had ...
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Founder’s Award

Dr. 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 ...
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LGDA at the ATS International Conference

Each 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 ...
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Register NOW for 1st LGDA Patient & Family Conference – June 2014 – See more at: https://www.lgdalliance.org/2013/11/conference2014/#sthash.NpIjHijR.dpuf
Register NOW for 1st LGDA Patient & Family Conference – June 2014 – See more at: https://www.lgdalliance.org/2013/11/conference2014/#sthash.NpIjHijR.dpuf

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