Author Archives: Admin

Assessing Care Experience for Adult Patients with Vascular Anomalies

As the advocacy organization for the rare vascular anomalies of GLA/lymphangiomatosis, GSD, and KLA, the LGDA is aware of the lack of resources for adults with these conditions. We are working on recruiting adult providers but we need hard data from patients to help define where clinical resources are lacking. We have developed a survey to gather your experiences as

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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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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

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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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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

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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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