Category Archives: LGDA Mission

#LGDAwarenessDay Event in the Netherlands

On May 26, 2017, the Van der Velden family hosted their first #LGDAwarenessDay at their home in Dordrecht, the Netherlands; fifteen-year-old Ella van der Velden has lymphangiomatosis. To raise awareness for this disease and Gorham-Stout disease (GSD), the family invited people by social media, email and the local newspaper to visit from 1-6pm. The family spoke with visitors at a

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Dr. Cameron Trenor Receives Founder’s Award

Cameron C. Trenor, III, MD, Assistant Professor of Pediatrics, Harvard Medical School, and Director of Clinical Research for the Vascular Anomalies Center at Boston Children’s Hospital, was presented with the 4th Founder’s Award during the 2nd International Conference on Generalized Lymphatic Anomaly (GLA) and Gorham-Stout Disease in Atlanta, Georgia, June 10, 2016. Created by LGDA Founder Jana Sheets, the award

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Million Dollar Bike Ride

Donate today to help LGDA raise $20,000 On Saturday, May 9, 2015, Team LGDA will participate in the 2nd Annual Million Dollar Bike Ride in Philadelphia, Pennsylvania, to raise more than $1 million for rare disease research. All funds raised for Team LGDA will be used for a lymphangiomatosis and Gorham’s disease research project chosen by the LGDA.  Once Team

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Rare Disease Day Event

  LGDA President Jack Kelly to speak at Rare Disease Day Event   The LGDA and other advocates have joined with the National Organization for Rare Disorders (NORD) to sponsor a Statehouse Event dedicated to educating and informing the public, elected officials, legislative staff and the media: Georgia Rare Disease Day State House Event Friday February 27, 2015 State Capitol

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Orphan Drug Heroes

World Orphan Drug Congress USA Heroes Wall           For 4 years the World Orphan Drug Congress USA has sought inspiration from rare disease patients to continue with the research and discovery for orphan drugs. This year WODC USA asked rare disease patients and advocacy groups who inspires them and selected the 30 heroes of the sector.

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LGDA Intercedes to find help for Child in South America

In early April 2013 the Lymphangiomatosis & Gorham’s Disease Alliance (LGDA) was contacted by Dr. Mishy Lesser, a Boston-based educator, seeking assistance for a child in the Amazon jungle region of Ecuador. Dr. Lesser had just received an urgent plea for help from a former student, Ladio Dominguez, who resides in Shushufindi, Ecuador.  Ladio spent two months in Amherst, Massachusetts, in

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LGDA @ ATS International Conference

The American Thoracic Society International Conference – Meet the Experts session in Philadelphia on Saturday, May 18, 2013, was a great success for the lymphangiomatosis and Gorham’s disease community. In attendance were 3 patients, 4 parents of patients, 2 spouses of patients, 1 friend of a patient, and 3 physicians (pulmonologist, endocrinologist, and orthopedic surgeon)! For two and a half

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Central Florida LGDA Golf Tournament

Event:  Central Florida LGDA Golf Tournament Start:  May 18, 2013 12:00 pm End:   May 18, 2013 6:00 pm Cost:  $55.00/person Organizer:  Jessica & Michael Glover Updated: April 5, 2013 Venue: Stoneybrook West Golf Club Address:  Google Map 15501 Towne Commons Blvd.,Wintergarden, FL, 34787, United States The first Central Florida Lymphangiomatosis & Gorham’s Disease Alliance Golf Tournament is underway! Proceeds, donations-in-kind and registration

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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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