These are our three main goals to provide each and every one of you with the help, the knowledge and the strength to deal with lymphangiomatosis / Gorham’s disease.
The Alfie Milne Trust represents the LGD Alliance Europe in the UK.
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 the 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 Patient 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, Italy, were#LGDAwareness Day and the Million Dollar Bike Ride.
Corona virus, information for patients
Dissecting the Mechanism of Bone Loss in Gorham-Stout Disease
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