Tag Archives: communication

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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LGDA 5th Anniversary

  The Lymphangiomatosis & Gorham’s Disease Alliance is pleased to commemorate the recent 5th-Year milestone of its founding by Jana K. Sheets.   Jana had a dream in two parts: one, to build an organization of people who would support one another in their journeys with lymphangiomatosis and Gorham’s disease; and, two, to promote awareness about these diseases, help patients

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Rare Disease Day 2013

  For the third consecutive year the Lymphangiomatosis & Gorham’s Disease Alliance (LGDA) is participating in the Rare Diseases Day Awareness Event at the University of Florida, Gainesville.  Along with Dr. John D. Reith, Professor and Director of the Bone Pathology Lab, UF/Shands, the LGDA inaugurated this event in 2011 by hosting an information table on Gorham-Stout syndrome and other

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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, surgeons, patient support organizations, and representatives from the National Institutes

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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 three surgeries, with the most recent requiring three blood

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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 history in public service, innovative spirit, and outstanding leadership skills.

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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 and Gorham’s disease will be featured at the Forum. During

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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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CaringBridge

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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