Category Archives: Awareness

Rare Disease Day 2012

UNIVERSITY OF FLORIDA COLLEGE OF MEDICINE AT SHANDS HOSPITAL HOLDS 2ND ANNUAL RARE DISEASES DAY EVENT The LGDA and the Orthopaedic & Sports Medicine Institute at the University of Florida College of Medicine & Shands Hospital, Gainesville, FL, joined together to organize the 2nd Annual Rare Disease Day event, comprised of an all day exhibit featuring information booths on rare

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1st Annual Golf Outing

KEWASKUM, Wis. (LGDA News) – New friendships were forged, thousands of dollars were raised and a world record was broken at the first LGDA Golf Outing Sept. 24. Proceeds totaling about $18,000 went to the Lymphangiomatosis & Gorham’s Disease Alliance (LGDA) for research of these rare and debilitating diseases. Nearly 60 golfers and 50 more dinner attendees enjoyed a fun

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Who’s Who at ATS-PAR

Among the several scientific and medical societies and patient advocacy groups with which LGDA is affiliated is the American Thoracic Society through its Public Advisory Roundtable – Council of Public Representatives. LGDA president Jack Kelly and the LGDA were the subject of a feature article, “Who’s Who at ATS PAR,” on page 4 of the Mar/Apr 2010 edition of ATS-PAR News. This article is an excellent

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First Concensus Meeting on Lymphatic Anomalies

  Led by the outstanding efforts of two members of the Medical Advisory Council of the LGDA—Denise M. Adams, MD, Medical Director, Hemangioma and Vascular Malformations Clinic at Cincinnati Children’s Hospital, and Steven J. Fishman, MD, Co-Director, Vascular Anomalies Center, Children’s Hospital Boston—the first Consensus Meeting on Lymphatic Anomalies was held at Children’s Hospital Boston on February 4, 2011. Patients

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Walk for Lymphangiomatosis

  When their son Ethan was diagnosed with lymphangiomatosis in October 2009 at age 7 months, Nick and Kelly Moss were devastated. Once the shock wore off, they decided they had to do something to help their son and others living with this disease. On July 24, 2011, Nick set out on a 1500-mile military style walk across the United

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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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Rare Diseases Day 2011

UNIVERSITY OF FLORIDA COLLEGE OF MEDICINE AT SHANDS HOSPITAL SPONSORS RARE DISEASES DAY EVENT 2/25/2011 The Lymphangiomatosis & Gorham’s Disease Alliance (LGDA) and the University of Florida College of Medicine & Shands Hospital, Gainesville, FL, and UF ‘s Orthopaedic & Sports Medicine Institute, are having an all day exhibit and information booth on rare bone diseases, including bone tumors, on

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LGDA Joins Rare Bone Disease Patient Network

first posted 12/18/2007 It is a distinct pleasure to announce that The Lymphangiomatosis & Gorham’s Disease Alliance has been accepted as a member of the Rare Bone Disease Patient Network (RBDPN), a coalition of rare bone disease organizations, established under the auspices of the U. S. Bone and Joint Decade (USBJD). The USBJD is a global, multi-disciplinary initiative targeting the

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