About Us

Lymphangiomatosis & Gorham’s Disease Alliance - Europe was established in 2010 as a sister organization of the US-based Lymphangiomatosis & Gorham’s Disease Alliance. It is a non-profit pan-European organization started with the aim of connecting patients, clinicians and researchers affected by and dedicated to these rare diseases of lymphangiomatosis or Gorham’s disease.

At this point we are just a young, recently-founded organization, seeking our way to be able to give the best support for the patient community. However, we have the more established LGD Alliance with international extent on our side. We are taking our first steps united and in co-operation to try to offer a better future for all patients and families affected by lymphangiomatosis or Gorham’s disease world wide.

The main reason for founding an European Organization was to be better able to meet the specific needs of the European patient, clinician and research communities. It also gives us the opportunity to participate fully in European activities for the benefit of those affected by rare conditions.

For patients and families, LGD Alliance - Europe offers support, information and contacts for clinicians with experience treating these diseases. For the research and clinical community, we aim to form a solid platform to support and advance research and clinical care on these diseases.

Please explore this website to learn more about LGD Alliance Europe. If you have questions, or are looking for help or resources, please 

send an e-mail to: