Support. Educate. Hope.
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.
LGD Alliance Europe in the United Kingdom
The Alfie Milne Trust represents the LGD Alliance Europe in the UK.
News
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
More news
"Bring patients together to give them a bigger voice together than they could ever have on their own."
Titta Anttila, Finland
Executive board of the LGD Alliance Europe
"We didn't know other patients with Gorham's or Lymphangiomatosis. Contact with other patients and doctors, all around Europe gives us a chance to compare possible treatments and therapies."
Lucia Nannetti, Italy
Mother of a patient
"My research on lab grown meet and that on rare lymphatic malformations benefits hugely from each other. Our combined efforts will have positive effects for all our children and grand-children."
Mark Post, the Netherlands
Ambassador for the LGD Alliance Europe
"We work hard on scientific research on Lymphangiomatosis and Gorham's Disease. It may even benefit thousands of people with related vascular malformations."
Doctor Jochen Rössler, Germany
Medical advisor for the LGD Alliance Europe
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