Category Archives: Latest News

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

» Read more

Illinois Pre-Teens Raise over $3,000 for LGDA

On behalf of the entire community of patients around the world, the LGDA would like to express a GINORMOUS THANK YOU to two young ladies in Illinois who organized a neighborhood fundraising event in support of the Alliance. Madeline’s 9-year old brother Zachary was diagnosed with lymphangiomatosis when he was three.  Madeline has always been so proud of her brother’s

» Read more

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

» Read more

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

» Read more


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

» Read more

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

» Read more
1 8 9 10