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 Establishes Patient Registry

Will Participate in Global Rare Diseases Patient Registry The Lymphangiomatosis & Gorham’s Disease Alliance (LGDA) is pleased to announce the establishment of the International LGDA Registry for Lymphatic Malformations (LGDA Registry), a major goal of the LGDA since the organization’s founding. The LGDA Registry will be instrumental in accelerating the ...
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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, ...
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Community Event Supports Work of LGDA

5K/Run-Walk Marks the Battle of Young Girl Folks in the community of Orrick, Missouri, got together a few months ago and decided to do something  to give support and hope to a young girl in town,  Maci Jeffries.   Maci is 11 years old and has been struck with Gorham's disease,  ...
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National Organization of Vascular Anomalies (NOVA) Bi-annual Conference

Recently the Lymphangiomatosis and Gorham's Disease Alliance (LGDA) accepted an invitation from Karla Hall, Executive Director of NOVA, to attend the bi-annual conference of the National Organization of Vascular Anomalies at Cincinnati Children's Hospital.  The gathering of patients and clinicians affected by a number of vascular/lymphatic disorders was a full ...
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Rare Disease Day 2013

For the third consecutive year the Lymphangiomatosis & Gorham's Disease Alliance (LGDA) is participating in the Rare Diseases Day Awareness Event at the University of Florida, Gainesville.  Along with Dr. John D. Reith, Professor and Director of the Bone Pathology Lab, UF/Shands, the LGDA inaugurated this event in 2011 by ...
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Warrior Craft Project for 2013 Golf Outing

To add a personal touch to the LGDA Golf Outing Fundraiser for 2013, we are issuing this invitation to Lymphangiomatosis and/or Gorham’s disease patients—Warriors as we call them in the LGD Alliance— to create an item (or items) on their own to be included in the raffle done in conjunction ...
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News and Events by Year
Register NOW for 1st LGDA Patient & Family Conference – June 2014 – See more at:
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2017 News

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2013 News

2012 News


Archived Newsletters

2010 Fall

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Summer 2009

1st Edition – Winter 2009