Archive for January 14, 2019

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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