LGDA Mission


 

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 ...
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LGDA Hosts First Non-Event Fundraiser

You read that correctly. Our Non-Event is guaranteed to please everyone everywhere because you’re doing whatever you want, which may or may not include absolutely nothing. We’re not holding an event. We’re not booking a hall, picking a menu, hiring entertainment, scheduling activities, twisting arms to get volunteers, hoping for ...
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#LGDAwarenessDay Event in the Netherlands

On May 26, 2017, the Van der Velden family hosted their first #LGDAwarenessDay at their home in Dordrecht, the Netherlands; fifteen-year-old Ella van der Velden has lymphangiomatosis. To raise awareness for this disease and Gorham-Stout disease (GSD), the family invited people by social media, email and the local newspaper to ...
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Dr. Cameron Trenor Receives Founder’s Award

Cameron C. Trenor, III, MD, Assistant Professor of Pediatrics, Harvard Medical School, and Director of Clinical Research for the Vascular Anomalies Center at Boston Children's Hospital, was presented with the 4th Founder's Award during the 2nd International Conference on Generalized Lymphatic Anomaly (GLA) and Gorham-Stout Disease in Atlanta, Georgia, June ...
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Million Dollar Bike Ride

Donate today to help LGDA raise $20,000 On Saturday, May 9, 2015, Team LGDA will participate in the 2nd Annual Million Dollar Bike Ride in Philadelphia, Pennsylvania, to raise more than $1 million for rare disease research. All funds raised for Team LGDA will be used for a lymphangiomatosis and ...
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Rare Disease Day Event

LGDA President Jack Kelly to speak at Rare Disease Day Event The LGDA and other advocates have joined with the National Organization for Rare Disorders (NORD) to sponsor a Statehouse Event dedicated to educating and informing the public, elected officials, legislative staff and the media: Georgia Rare Disease Day State ...
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