Research is essential to know what causes conditions like Lymphangiomatosis and Gorham’s Disease and to help find effective treatment. Due to the rarity of the disease, the majority of publications are case reports. An overview of reports can be found at

Genetic research at Great Ormond Street Hospital (funded by Alfie’s Trust)

UK-based research into Lymphangiomatosis takes place at Great Ormond Street Hospital in London and the UCL Institute of Child Health (ICH) which is located next door. The research is led by Dr Veronica Kinsler who works at both institutions.

In September 2014, blood samples and/or skin samples were taken from children diagnosed with Lymphangiomatosis and their families.  Dr Kinsler will be looking to find out which genes are involved in causing Lymphangiomatosis.  Some genes for lymphatic conditions are known, however, most remain unknown.

Finding the root cause of Lymphangiomatosis would be a crucial step forward in understanding the condition. This is exciting new research but we are still waiting for results.

LMI – LGDA research partner

The Lymphatic Malformation Institute (LMI) is a not-for-profit organisation whose mission is to improve the clinical care of patients with Lymphangiomatosis or Gorham’s Disease. LMI helps to fund research focused on identifying effective therapies for treating these rare conditions.

A current project is the Lymphatic Anomalies Registry at Boston Children’s hospital to collect data from patients, refer physicians and monitor responses to therapies and long-term outcomes.

More information can be found at