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A somatic activating NRAS variant associated with kaposiform lymphangiomatosis

Barclay et al published an article in the Journal Genetics in Medicine and we got permission from the author to share a link on our website. Purpose: Kaposiform lymphangiomatosis (KLA) is a rare, frequently aggressive systemic disorder of the lymphat
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Assessing Care Experience for Adult Patients with Vascular Anomalies

As the advocacy organization for the rare vascular anomalies of GLA/lymphangiomatosis, GSD, and KLA, the LGDA is aware of the lack of resources for adults with these conditions. We are working on recruiting adult providers but we need hard data from
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New Video Presenting VASCERN released

This video presents VASCERN, its members and the work that the network does to improve the lives of patients with rare vascular diseases. Subtitles now available in English and French. Additional EU languages will be added soon. How can VASCERN
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Somatic activating mutations in PIK3CA cause generalized lymphatic anomaly

A team of researchers, including our ‘own’ Michael Dellinger, Juan Carlos López-Guttiérrez and Victor Martínez-Glez, have published this outstanding article on GLA, formerly known as lymphangiomatosis. Abstract Generalized lymphatic anoma
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SLAM DUNK FOR LGDA!

Francesca “FORZA FRANCY” D’Agostino and basketball team Scandone donated 1500 euro’s to the LGD Alliance Europe for support, education and research on Generalized Lymphatic Anomaly (formerly known as lymphangiomatosis) and Gorham-Stout Diseas
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LGDA and LMI Announce 2018 UPenn Orphan Disease Center Million $$$ BikeRide Research Awards

The LGDA and partner, the Lymphatic Malformation Institute (LMI), are pleased to announce the selection for research awards  for the coming year for the study of Gorham-Stout Disease (GSD) and generalized lymphatic anomaly (GLA, formerly lymphan
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GLA/GSD/KLA clinics for European patients set

Due to the success of two previous expert clinics organized by Dr. Lopez-Gutierrez at La Paz Hospital in Madrid (Spain), more clinic dates have been announced.   The first date is Thursday, Dec. 20, with the second in January (date to be announc
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A mother’s view on lymphangiomatosis

Lucia Nanetti from Italy has a son with lymphangiomatosis. She wrote the following: “According to her (the Lymphangiomatosis) you could not do sport, run, tire yourself because your lungs do not allow it. For her, you had to be sold out 6 years
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Join the LGD Alliance Europe General Meeting

Always wanted to join, but not sure how? This is your chance to see how the LGD Alliance Europe tries to offer support, educate people and offer hope for the future by looking into research. The board and team leaders meet monthly. But four times a y
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Benefietavond tvv vzw LGD Alliance Belgium

Na het succes van de vorige edities wagen we ons nu aan een derde benefiet-weekend ten voordele van de vzw LGD Alliance Belgium op vrijdag 21 en zaterdag 22 september 2018. Het programma voor beide avonden is hetzelfde: • 18u30 – Receptie •
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