Category Archives: Research News

2019 MDBR Brings in Over $60K for Research

We want to thank Team LGDA & LMI and all of you who supported them in the 2019 Million Dollar Bike Ride. Including matching funds, the event raised more than $60,000.00 that will go to important research of GLA, GSD, KLA, and CCLA! UPDATE: On August 22, 2019 the Orphan Disease Center issued its RFA for this funding cycle. The

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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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2 Grants Available for GLA/GSD Research

The Orphan Disease Center (ODC) at the University of Pennsylvania invites researchers to participate in the 2017 Million Dollar Bike Ride Pilot Grant Program.  The program is now open and offering 33 different research grant opportunities focusing on 23 different rare diseases.   This program provides a one‐year grant to support research related to a rare disease represented in the

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2016 MDBR Funds 2 New Studies

  The Lymphangiomatosis & Gorham’s Disease Alliance (LGDA) and the Lymphatic Malformation Institute (LMI) are proud to announce the two projects selected to receive the LGDA-LMI 2016 MDBR Rare Disease Research Grants. The LGDA and LMI joined together Saturday, May 7, 2016, in Philadelphia to participate in the 3nd Annual Million Dollar Bike Ride. Together the teams raised $80,000, which

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