How did things get started?

2007 – LGD Alliance

The late Jana K. Sheets (1974-2010) founded the American LGD Alliance after she was diagnosed with this disease. Her father Jack Kelly is continuing her work.


2010 – LGD Alliance Europe

The non-profit Lymphangiomatosis & Gorham’s Disease Alliance – Europe was established in 2010 as a European sister organisation of the US based Lymphangiomatosis & Gorham’s Disease Alliance.


2011 – Alfie’s Trust (UK)

In 2011 Alfie’s parents, Tracy and Mark founded Alfie’s Trust, a registered charity in Scotland (SC043165). Research is vital in order to give sufferers a future.


2015 – LGD Alliance Nederland (NL)

Two parents (Aaike and Ange) of different patients (Bo and Ella) founded the LGD Alliance Nederland in the Netherlands in 2015. Their goals are the same as those of the LGDA, LGDA Europe and Alfie’s Trust.


2016 – LGD Alliance Belgium (BE)

Mireille Vorsselmans, mother of Sete started the LGD Alliance Belgium. Their goals are the same as of those of the LGDA, LGDA Europe, Alfie’s Trust and LGDA Nederland.