1st International Conference on Generalized Lymphatic Anomaly and Gorham-Stout Syndrome

The Lymphatic Malformation Institute (LMI) and the Lymphangiomatosis and Gorham’s Disease Alliance (LGDA) are proud to host the 1st International Conference on Generalized Lymphatic Anomaly and Gorham-Stout Syndrome. The meeting will be held at the Hyatt Regency in Bethesda, MD from June 7-8, 2013. The conference will be chaired by Dr. Bjorn Olsen (Harvard School of [...]
ATS-PAR Meet the Expert 2013 – Philadelphia

As a member of the American Thoracic Society Public Advisory Roundtable, the Lymphangiomatosis & Gorham’s Disease Alliance (LGDA) is pleased to invite you to participate in the Patient-and-Family Forum, Saturday, May 18, 2013, during the International Conference of the American Thoracic Society at the Loews Philadelphia Hotel in Pennsylvania. For the second time lymphangiomatosis and Gorham’s [...]
Warrior Alfie Starts to School

Alfie Milne’s parents, Mark and Tracy Milne, generously shared his story on our website earlier this year. At the time Alfie had been on Rapamune/sirolimus for a few months and had just received his walking frame. Now, Alfie has been on the drug for almost a year, since September 2011, and is doing remarkably well. [...]
First Concensus Meeting on Lymphatic Anomalies

Led by the outstanding efforts of two members of the Medical Advisory Council of the LGDA—Denise M. Adams, MD, Medical Director, Hemangioma and Vascular Malformations Clinic at Cincinnati Children’s Hospital, and Steven J. Fishman, MD, Co-Director, Vascular Anomalies Center, Children’s Hospital Boston—the first Consensus Meeting on Lymphatic Anomalies was held at Children’s Hospital Boston on [...]
About lymphangiomatosis & Gorham’s disease

Our website is designed to help you learn about lymphangiomatosis and Gorham’s disease. We hope you find it easy to navigate and to find the information you are looking for. In this post we’ve included links to some of the main topics on the web site to help you get started. If there is a [...]
Become A Donor

When you become a donor you help to improve the quality of life for those affected by these diseases and support research to improve diagnosis and treatment. Your donations help us to provide patients and their family’s much-needed educational information and help to keep them connected with one another through a worldwide patient network. When [...]

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News

Through our news page we keep you up-to-date on the activities of the LGDA, as well as news and events of interest to our community. You also will find links to our blog and our archived e-newsletters.

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Education

Education is the thread that links all the goals of the LGDA and is at the core of our mission to improve patient care by promoting research that will identify effective treatments and a cure for these diseases. Our mission centers on educating patients and their families, the professionals involved in their diagnosis and treatment, [...]

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Ways to Give

Volunteers and private donations are the life-blood of the LGDA. Everything we do and every dollar raised to do those things is made possible by the efforts of generous individuals who believe in our mission. There are many things you can do to help support the mission of the LGDA.

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Coming Events


	
	
		
			
								
		

		
			
			
				
	June 2013
	
		
	
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										1st International Conference on Generalized Lymphatic Anomaly and Gorham-Stout Syndrome																			
																		
										Jun 6 – Jun 7 all-day									

								


																

									
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Previous Events

LGDA 5th Anniversary

The Lymphangiomatosis & Gorham’s Disease Alliance is pleased to commemorate the recent 5th-Year milestone of its founding by Jana K. Sheets. Jana had a dream in two parts: one, to build an organization of people who would support one another in their journeys with lymphangiomatosis and Gorham’s disease; and, two, to promote awareness about these [...]

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Golf Outing Raises $41,000+

Organizers of 2nd Annual LGDA Golf Outing: Support ‘humbling’ to help cure 2 of world’s rarest diseases BROWN DEER, Wis. (LGDA News) – The second annual Lymphangiomatosis & Gorham’s Disease Alliance (LGDA) Golf Outing was already deemed a success before the first ball was even put on a tee, but even the organizers never [...]

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