Category Archives: Patient & Family Resources

Diffuse Pulmonary Lymphangiomatosis Clinics

  A Partnership with LAM   One of the most difficult manifestations of lymphangiomatosis and Gorham’s disease to diagnose and manage is diffuse pulmonary lymphangiomatosis (DPL).  This manifestation involves the lymphatic system throughout the patient’s chest and has numerous clinical presentations.  DPL often is a slowly progressing lung disease that can lead to respiratory failure that can occur at any

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ATS-PAR Meet the Expert 2013 – Philadelphia

  As a member of the American Thoracic Society Public Advisory Roundtable, the Lymphangiomatosis & Gorham’s Disease Alliance (LGDA) is pleased to invite you to participate in the Patient-and-Family Forum, Saturday, May 18, 2013, during the International Conference of the American Thoracic Society at the Loews Philadelphia Hotel in Pennsylvania. For the second time lymphangiomatosis and Gorham’s disease will be featured

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LGDA Establishes Patient Registry

Will Participate in Global Rare Diseases Patient Registry The Lymphangiomatosis & Gorham’s Disease Alliance (LGDA) is pleased to announce the establishment of the International LGDA Registry for Lymphatic Malformations (LGDA Registry), a major goal of the LGDA since the organization’s founding. The LGDA Registry will be instrumental in accelerating the pace of basic and clinical research for the life-threatening disorders

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Personal Health Records

  How often have you found yourself sitting in a waiting room with a clipboard balanced on your lap trying to put complete answers in too small a space, all the while worrying that you’ll leave out something important? All doctors and hospitals ask for much of the same information at your initial visit or when you seek treatment in

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The LGD Alliance is a proud CaringBridge Partner. Many members of our community have created a free CaringBridge page to help them keep in touch with friends and family as they deal with the challenges of living with lymphangiomatosis and Gorham’s disease. CaringBridge’s free websites offer a personal and private space to communicate and show support, saving time and emotional

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