Thank you to the Lymphangiomatosis and Gorham’s Disease Alliance (LGDA) and Lymphatic Malformations Institute (LMI) for organising the 2nd International Medical Conference on lymphangiomatosis and Gorham’s disease. Part-funded by Alfie’s Trust, this conference was to bring together leading clinicians/researchers with particular experience and interest in our two rare diseases. The purpose is to begin the formal iteration of the clinical guidelines for diagnosis, treatment and care for our patients.