Author Archives: Admin

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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2018 LGDA Patient and Family Conference Report

Over the last weekend of July 2018, the LGDA hosted its second International Patient and Family Conference in Dallas, Texas. Since its founding in 2007, the LGDA has had as a primary goal to bring together patients and their families, clinicians, and researchers to share experiences and knowledge that will help to improve understanding of generalized lymphatic anomaly (GLA), formerly

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Structure and Function of Lymphatic System

Presented by Miikka Vikkula, M.D., Ph.D., Professor of Human Molecular Genetics, de Duve Institute, University of Louvain, Brussels, Belgium, at the LGDA Patient & Family Conference, 27 July 2018. Abstract: The circulatory system consists of two highly-branched tubular structures: the blood vessels and the lymphatic vessels. These systems are essential for the transport of fluids, gas, molecules and cells to

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LGDA Awards 5th Founder’s Award

The Board of Directors of the Lymphangiomatosis & Gorham’s Disease Alliance (LGDA) is quite pleased to announce that Judith Margolin, MD, is the 2017-2018 recipient of its special biennial Founder’s Award. Dr. Margolin is a pediatric hematologist-oncologist in Houston, on staff at Texas Children’s Hospital.  She received her medical degree from University of Cincinnati College of Medicine   Dr. Margolin is Co-Director

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Register for 2018 Patient & Family Conference

The 2018 Lymphangiomatosis & Gorham’s Disease Alliance Patient & Family Conference will be held on July 27 & 28, 2018, at the Hilton DFW Lakes Executive Conference Center in Dallas suburb of Grapevine, Texas. Planning is well underway for this exciting conference that you won’t want to miss! Those attending the conference will learn more about generalized lymphatic anomaly /

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2 Fundraisers in Dordrecht, the Netherlands for #LGDAwareness Day 2018

Cruising for Ella One of the fundraising events taking place for #LGDAwareness Day is Cruising for Ella on May 25th. This is a spectaculair experience from the water while watching old steam ships come by. Dinner and drinks included! Register: varenvoorella@gmail.com. Live for Ella Three bands from the Netherlands will give a benefit concert on the 31st of May at

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Finding Help and Support

Finding the LGDA was a lifeline for Tracy and her family ‘Feeling that you belong somewhere – helps.  Knowing that you can talk to someone that understands – helps.  Being able to share your experiences so others can learn from it – helps.  So why is it still the case that after being diagnosed with a rare disease you are

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