News
#LGDAwareness Day and the Million Dollar Bike Ride.
This is the time of year when the LGDA focuses on two major events. Our annual #LGDAwareness Day on May 26 and the Million Dollar Bike Ride. Through our social media channels, you will have seen that the Million Dollar Bike was due to take place on tRead More
Corona virus, information for patients
The VascERN (European Reference Network on Rare Multisystemic Vascular Diseases, specifically the VASCA working group) wrote a statement on Covid-10, initated by patient advocacy groups in Europe and the US. COVID-19 statement VASCA_20200323.pdf PatiRead More
Dissecting the Mechanism of Bone Loss in Gorham-Stout Disease
Gorham-Stout disease (GSD) is characterized by progressive bone destruction and proliferation of lymphatic vessels. In 2016, Andrea Del Fattore, PhD, and Andrea Bartuli, MD, and their team at Bambino Gesù Children’s Hospital, in Rome, IRead More
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 lymphatRead More
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 fromRead More
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 VASCERNRead More
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 anomaRead More
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 DiseasRead More
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 lymphanRead More
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 announcRead More
