Conference News


Transition from Pediatric to Adult Care

Representing the LGDA at the 10th Annual Health Care Transition Research Consortium Research Symposium and the 19th Annual Chronic Illness and Disability Conference: Transition from Pediatric to Adult-based Care, in the Texas Medical Center were LGDA Director of Patient Programs, Lisa Klepper, and LGDA board member, Tiffany Ferry. The meetings ...
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Directions in Research

Presented by Michael Dellinger, PhD, University of Texas Southwestern Medical Center In the past, there were limited resources available for research on generalized lymphatic anomaly (GLA), kaposiform lymphangiomatosis (KLA), and Gorham-Stout disease (GSD). The Lymphatic Malformation Institute (LMI) was created in 2011 to address this need. The LMI fosters collaborations ...
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Discovering the Genetic Basis of Rare Diseases

Presented by Michael Dellinger, PhD, University of Texas Southwestern Medical Center DNA carries all of the instructions for the development of an organism. DNA is a long polymer made up of the building blocks, G, A, T, and C. Genetic mutations are changes to the sequence of DNA. Some genetic ...
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Pulmonary Complications

Presented by David R. Spielberg, MD, MHSc, Texas Children's Hospital, Houston, TX Often the pulmonary complications of the lymphatic malformations can manifest as or mimic other common disorders: cough or wheezing, thus mimicking asthma or non-specific chronic cough.  Lack of response to the usual treatments for these disorders may be ...
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Use of Bisphosphonates in GLA/GSD/KLA

Presented by Yaser A. Diab, M.B.B.S., Children’s National Health System, Washington, DC Complex lymphatic anomalies including Generalized Lymphatic Anomaly (GLA), Gorham–Stout disease (GSD), and Kaposiform Lymphangiomatosis (KLA) can involve the bones leading to bone destruction which can negatively impact the quality of life for patients with these lymphatic anomalies. At ...
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Use of Sirolimus in GLA/GSD/KLA

Presented by Cameron Trenor, MD, MMSc, Vascular Anomaly Center, Boston Children's Hospital Sirolimus has been FDA-approved since 1999 for immunosuppression but has many appreciated off-label uses, including for lymphatic disorders. Based on clinical study results and reported cases, sirolimus is often used for Gorham-Stout disease (GSD), generalized lymphatic anomaly (GLA)/lymphangiomatosis ...
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