Category Archives: Conferences

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 were held October 24-26, 2018 and co-hosted by Baylor College

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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 among scientists and promotes the dissemination of knowledge on GLA,

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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 mutations are germline mutations (heritable), whereas other mutations are somatic

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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 a clue to the presence of some other process.  This

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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 present, no standard treatment for these diseases exist, and due

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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 and other lymphatic conditions. Many lymphatic malformations are associated with

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The Multidisciplinary Team

Presented by Michael Briones, DO, and Rachel Swerdlin, MS, RN, CPNP, Emory University and Children’s Healthcare of Atlanta. Abstract: Gorham-Stout disease (GSD) is a rare vascular disorder of lymphatic origin characterized by bone destruction with massive osteolysis due to progression of lymphangiomatous tissue while Generalized Lymphatic Anomaly (GLA) is a multisystem disorder that also commonly affects bone and KLA is

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Interventional Radiology – MR Lymphangiogram

Presented by Maxim Itkin, MD, Director, HUP/CHOP Center for Lymphatic Imaging and Interventions Abstract: Lymphatic malformations (LM) are conditions that are characterized by proliferation of the lymphatic tissue in multiple organs. The major cause of mortality and morbidity in patients with LM is deterioration of pulmonary function due to chronic chylous effusions and progressive interstitial lung disease. The etiology of

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Role of Imaging in Diagnosis and Management of GLA, KLA, and GSD

Presented by Matt Hawkins, MD, Director – Pediatric Interventional Radiology, Children’s Healthcare of Atlanta at Egleston; Medical Director – Vascular Anomalies Clinic, Children’s Healthcare of Atlanta; Assistant Professor – Emory University School of Medicine Dept of Radiology and Imaging Sciences Abstract: Diagnostic imaging has become the primary means by which a number of lymphatic anomalies are diagnosed. More specifically, recent

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Differentiating the Various Rare Lymphatic Anomalies: GLA, GSD, KLA

Presented by Ionela Iacobas, MD, Assistant Professor of Pediatric Hematology-Oncology and Medical Director, TCH Vascular Anomalies Center, Texas Children’s Hospital, Baylor College of Medicine Abstract: A new diagnosis of lymphatic malformation presenting with a micro/macrocystic area AND an additional symptom may trigger very specific diagnostic studies for clear classification. This discussion will try to differentiate the 4 entities (Generalized Lymphatic

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