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.

 

 


COVID-19 Questions and Answers for Complex Vascular Anomalies Families

In an effort to address concerns of those living with rare vascular anomalies, several patient advocacy organizations have compiled a list of frequently asked questions from our affected families concerning COVID-19. The medical advisors from the patient advocacy organizations worked together to prepare responses to these questions. The vascular anomalies ...
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Donor Fair Raises Thousands for LGDA

Since their daughter was diagnosed with GLA in the summer of 2018, the Thomas family has made the 3 hour drive from their California home to Stanford for her treatment more than 2 dozen times. When Cece, now 2 years old, was diagnosed, Mr. Thomas' coworkers rallied around the family ...
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2019 Scientific Year in Review

A number of research studies were published in 2019 that will benefit patients around the world with complex lymphatic anomalies (CLAs). Below is information about about some key projects that were made possible through the financial support of patients, their families, friends of the LGDA and its research partner, the ...
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Dissecting the Mechanisms of Bone Loss in Gorham-Stout Disease

Gorham-Stout disease (GSD) is characterized by progressive bone destruction and proliferation of lymphatic vessels. In 2016, Andrea Del Fattore, PhD, and Andrea Bartuli, MD, and their team at Bambino Gesù Children's Hospital, in Rome, Italy, were awarded funds raised for a research study through the LGDA’s and LMI’s participation in ...
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Rare Disease Week on Capitol Hill

Rare Disease Week on Capitol Hill (February 25 - 28, 2020) brings rare disease community members from across the United States together to be educated on federal legislative issues, meet other advocates, and share their unique stories with legislators. We hope to have patients and families from across the country ...
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Rennie Family Fundraiser

We thank the Rennie family for their continuing support of the LGDA through their annual golf outing in honor of their son and brother, Matt Rennie. This year's event raised $2500.00 (US) that will benefit LGDA programs! ...
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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

2017 News

2016 News

2015 News

2014 News

2013 News

2012 News

2011News

Archived Newsletters

2010 Fall

Summer 2010

Summer 2009

1st Edition – Winter 2009