Nieuws

#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 t
Read 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 Pati
Read 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, I
Read 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 lymphat
Read 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 from
Read 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 VASCERN
Read 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 anoma
Read 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 Diseas
Read 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 lymphan
Read 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 announc
Read More