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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Senator Hatch and Representatives Lance and Butterfield introduced a resolution that heralds the success of the Orphan Drug Act (ODA) and calls for continued support of the legislation. This year marks the 35th anniversary for the ODA. That means 35 years of increased hope and treatments for the rare disease community. Prior to the ODA, there were only 34 therapies
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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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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 morePresented 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 morePresented 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 morePresented 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
» Read morePresented 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 morePresented 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 morePresented 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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