Category Archives: Events

Birthday Party Raises $5000

On July 29, 2018, the family of Adrian Santos hosted its second party to celebrate his 4th birthday and raise awareness about kaposiform lymphangiomatosis (KLA) and money for the LGDA to support research efforts. Once again, Adrian’s great aunt Linda Sutherland organized the event. Activities for the kids included face painting, animal balloons, crafts, and a Mad Scientist demonstration. Cleveland

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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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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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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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LGDA Represented at Rare Diseases Day 2018

On February 24, 2018, Texas Children’s Hospital hosted an event at The Health Museum in Houston, raising awareness for rare diseases in observance of the upcoming Rare Disease Day. The LGDA was one of 35 rare disease advocacy organizations represented at the event. Medical Director of the Vascular Anomaly Center at TCH, Dr Ionela Iacobas, hosted the exhibit for vascular

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