To add a personal touch to the LGDA Golf Outing Fundraiser for 2013, we are issuing this invitation to Lymphangiomatosis and/or Gorham’s disease patients—Warriors as we call them in the LGD Alliance— to create an item (or items) on their own to be included in the raffle done in conjunction ...
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Organizers of 2nd Annual LGDA Golf Outing: Support 'humbling' to help cure 2 of world's rarest diseases BROWN DEER, Wis. (LGDA News) – The second annual Lymphangiomatosis & Gorham’s Disease Alliance (LGDA) Golf Outing was already deemed a success before the first ball was even put on a tee, but ...
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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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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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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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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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