Foundation News

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Up-to-date information on the activities of the Lymphangiomatosis & Gorham’s Disease Alliance, as well as news and events of interest to patients and professionals.

 

 


2019 Million Dollar Bike Ride

It's time again for the Million Dollar Bike Ride! Now in its sixth year, this effort from our community has directly funded 10 research projects focused on our rare lymphatic diseases. In addition, the requests for proposals for research have identified other worthy projects that LGDA & LMI have funded ...
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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 ...
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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 ...
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Florida 10-year-old Raises $250 for Research

Ten-year-old Hunter Joiner of Florida was diagnosed in 2016 with lymphangiomatosis, also known as generalized lymphatic anomaly (GLA), and he wanted to do something to help everyone with the rare disease. So, he decided to sell t-shirts to raise money for the LGDA. When the fundraiser was over, Hunter had ...
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Capstone Project Yields Over $800 for Research

When Julian Cardenas, a 10-year-old in New York, was assigned to complete a capstone project at the end of his academic year he decided on Gorham-Stout disease as his topic. Julian was diagnosed with GSD when he was just 2 years old and wanted to raise awareness about the disease ...
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Kiltwalk in Scotland raises £4,000

LGDA partner Alfie's Trust in the United Kingdom shared with us one of their efforts to raise funds to support the international mission of the LGDA by participating in the Kiltwalk. The Kiltwalk is a unique charity that enables individual walkers and groups to raise money for a Scottish charity ...
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News and Events by Year
Register NOW for 1st LGDA Patient & Family Conference – June 2014 – See more at: https://www.lgdalliance.org/2013/11/conference2014/#sthash.NpIjHijR.dpuf
Register NOW for 1st LGDA Patient & Family Conference – June 2014 – See more at: https://www.lgdalliance.org/2013/11/conference2014/#sthash.NpIjHijR.dpuf

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1st Edition – Winter 2009