Awareness News


 

Family Hosts World #LGDAwareness Event

The image is of an article that appeared in the local newspaper where the van der Velden family lives in The Netherlands. The family is hosting an event in conjunction with the first World #LGDAwareness Day on May 26, 2017. Below the image is a translation of the text. Family ...
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5 Words on Being Rare

World LGDA Awareness Day The LGDA and its worldwide partners, LGDA-Europe and Alfie's Trust, are pleased to announce the establishment of an official Worldwide Awareness Day of May 26. May 26 was selected for the awareness date in honor of LGDA Founder Jana Sheets, who was born on that day ...
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Golf Outing Tops $100,000 Mark

By Scot Wiesner & Beth, Ryan and Claire Mantey After 5 years of being a part of the LGD Alliance Golf Outing in Wisconsin as an organizer and enjoying the camaraderie of everything it has become, we are proud to say that we are well over $100,000 in funds raised ...
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2nd International Conference on GLA & GSD

The Lymphangiomatosis and Gorham’s Disease Alliance (LGDA) and the Lymphatic Malformation Institute (LMI) were proud to host the 2nd International Conference on Generalized Lymphatic Anomaly and Gorham-Stout Disease. The conference was held at the W Hotel - Buckhead in Atlanta, GA from June 10-11, 2016. The conference was chaired by Dr ...
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Snapshots of the Data

Since the International LGDA Registry for Lymphatic Malformations (LGDA Registry) first went online more than 200 patients living on 6 continents have joined. The charts in this post highlight some of what we've learned so far about these participants' diagnoses; what percentage have disease in the chest, bones, abdomen, pelvis ...
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Rare Lung Diseases Consortium

The recently formed Rare Lung Diseases Consortium (RLDC) is holding a planning meeting in July 2015 to prepare for a national summit of all patient advocate organizations and the specialists in pulmonary science and medicine anticipated for 2016. The RLDC is a unique collaboration among patient organizations, clinical investigators and ...
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