Foundation News


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.



LGDA Names New Executive Director

The Lymphangiomatosis & Gorham’s Disease Alliance (LGDA) has selected Dr. Michael Kelly, the current Chief Medical Officer, as its new Executive Director. Dr. Kelly will succeed Jack Kelly, who is retiring at the end of May after nearly 14 years of leading the organization. Dr. Kelly joined the LGDA as ...
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From the Desk of LGDA President Jack Kelly

Dear Friends & Family, It is with sincere regret that the time has arrived to announce my retirement from the LGDA, effective June 1, 2021. At the same time, I am very excited about our new Executive Director whose appointment will be announced imminently! The LGDA was founded by my late ...
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LGDA to Participate in Trans-NIH Lymphatic Coordinating Committee (TNLCC)

The Lymphangiomatosis & Gorham’s Disease Alliance (LGDA) has been invited as the newest guest organization of the Trans-NIH Lymphatic Coordinating Committee (TNLCC). Dr. Michael Kelly, the Chief Medical Officer will represent the LGDA and our patient community in meetings with this important research committee. In 2002, the Trans-NIH Lymphatic Coordinating ...
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LGDA is Rare As One!

We’re part of the Chan Zuckerberg Initiative's (CZI) Rare As One Project — a group of 30 patient-led organizations that are accelerating research and driving progress in the fight against rare diseases. The Project aims to strengthen the efforts of the selected patient-led groups and will help these communities of ...
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2020 Million Dollar Bike Ride Research Award

The LGDA and the Lymphatic Malformation Institute (LMI), our research partner, are pleased to announce Andrea Del Fattore, PhD, has been awarded $81,965 to fund his project Understanding the effects of Sirolimus/Zolendronic acid treatment on bone remodeling activity in patients with Gorham-Stout disease. Dr. Del Fattore is the Head of ...
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Archived Newsletters

2010 Fall

Summer 2010

Summer 2009

1st Edition – Winter 2009