Category Archives: Advocacy

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 Dental Medicine), and Dr. Mike

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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 disease will be featured

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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 pace of basic and clinical research for the life-threatening disorders

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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 day of presentations by specialists in treating and studying disorders

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LGDA Joins Rare Bone Disease Patient Network

first posted 12/18/2007 It is a distinct pleasure to announce that The Lymphangiomatosis & Gorham’s Disease Alliance has been accepted as a member of the Rare Bone Disease Patient Network (RBDPN), a coalition of rare bone disease organizations, established under the auspices of the U. S. Bone and Joint Decade (USBJD). The USBJD is a global, multi-disciplinary initiative targeting the

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