Author Archives: Admin

Dine To Donate

Fundraising on behalf of the LGDA doesn’t require you to participate in a race or ride, host a dinner auction, put together a golf tournament – it can as simple as passing out a flyer or spreading the word on social media!  There are many restaurants who offer a “dine to donate” night.  You and the restaurant choose a date

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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 good weather and crossing our fingers people find time

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#LGDAwareness Day 2017

In May 2017, the LGDA and its counterparts in the UK and Europe conducted a weeklong campaign dedicated to raising awareness about GLA/lymphangiomatosis, Gorham-Stout disease, and KLA, which concluded with the very first #LGDAwareness Day on May 26, 2017. The theme for the week was “5 Words on Being Rare.” We asked patients, their families, and volunteers to select 5

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Supporting the Mission

All over the world, Warriors and the people who care about them make great efforts through fundraisers and awareness events to support the LGDA’s mission. Generalized lymphatic anomaly (GLA, also known as lymphangiomatosis), kaposiform lymphangiomatosis, Gorham-Stout disease (GSD), central conducting lymphatic anomaly (CCLA), and the other rare lymphatic anomalies are truly orphan diseases. Unlike some more common diseases of the

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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 visit from 1-6pm. The family spoke with visitors at a

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