Category Archives: Patient & Family Conference

Inaugural LGDA Science Award

For extraordinary accomplishments in discovery and advancement in the field of lymphatic science for the benefit of our worldwide patient community  presented to Michael T. Dellinger, PhD Assistant Professor Division of Surgical Oncology Department of Surgery Hamon Center for Therapeutic Oncology Research UT Southwestern Medical Center Dallas, Texas   The LGDA’s award for a scientist was made at the 2nd

» Read more

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,

» Read more

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

» Read more

Coagulopathy in GLA/GSD/KLA

Presented by Judith F. Margolin, MD, Texas Children’s Hospital, Houston, TX Patients and their families face a veritable alphabet soup of acronyms starting with diagnoses (GLA/GSD/KLA), including diverse tests for diagnoses and monitoring (e.g., PT, PTT, Factors I-XII, d-dimers, DIC, LIC), and culminating with a host of procedures and drugs (generic and brand names)! Many of these terms, drugs, and

» Read more

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

» Read more

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

» Read more

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

» Read more

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

» Read more

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

» Read more

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

» Read more
1 2