The Lymphangiomatosis & Gorham’s Disease Alliance (LGDA) is a founding member of the newly created Rare Bone Disease Advocacy Alliance, a coalition of rare bone disease organizations committed to advancing research of rare bone diseases by working directly with Congress and the Executive Branch. On September 18, 2013, advocates from the LGDA and other Rare Bone Disease Advocacy Alliance (RBDAA)
» Read moreThank You for Your Support The first ever Central Florida LGDA Golf Tournament at Stoneybrook West Golf Club was a complete success! The hot weather didn’t seem to dampen the golfers’ enthusiasm and spirit. The Golf Tournament started early with our energetic volunteers setting up and organizing the details of the day so that everything ran smoothly. Golfers arrived around
» Read moreIn early April 2013 the Lymphangiomatosis & Gorham’s Disease Alliance (LGDA) was contacted by Dr. Mishy Lesser, a Boston-based educator, seeking assistance for a child in the Amazon jungle region of Ecuador. Dr. Lesser had just received an urgent plea for help from a former student, Ladio Dominguez, who resides in Shushufindi, Ecuador. Ladio spent two months in Amherst, Massachusetts, in
» Read moreThe American Thoracic Society International Conference – Meet the Experts session in Philadelphia on Saturday, May 18, 2013, was a great success for the lymphangiomatosis and Gorham’s disease community. In attendance were 3 patients, 4 parents of patients, 2 spouses of patients, 1 friend of a patient, and 3 physicians (pulmonologist, endocrinologist, and orthopedic surgeon)! For two and a half
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200 people Run Balmoral to raise money for The Alfie Milne Lymphangiomatosis Trust On April 27, 2013, Mum Tracy, Dad Mark and Big Brother Lewis put their trainers back on to run for Alfie’s Trust.
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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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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
» Read more5K/Run-Walk Marks the Battle of Young Girl Folks in the community of Orrick, Missouri, got together a few months ago and decided to do something to give support and hope to a young girl in town, Maci Jeffries. Maci is 11 years old and has been struck with Gorham’s disease, a very rare disorder which can seriously affect the musculoskeletal
» Read moreRecently the Lymphangiomatosis and Gorham’s Disease Alliance (LGDA) accepted an invitation from Karla Hall, Executive Director of NOVA, to attend the bi-annual conference of the National Organization of Vascular Anomalies at Cincinnati Children’s Hospital. The gathering of patients and clinicians affected by a number of vascular/lymphatic disorders was a full day of presentations by specialists in treating and studying disorders
» Read moreFor 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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