Are you finding it difficult to find a doctor for yourself or a loved one?

At Alfie’s Trust, we have access to a list of physicians from around the world compiled by the LGDA. These doctors have experience diagnosing and treating patients with different aspects of Lymphangiomatosis and Gorham’s Disease.

Specialities include paediatrics, orthopaedics, surgery, pulmonology, haematology, oncology, thoracic surgery, maxillofacial surgery, endocrinology and many others. Please contact us at  to help you locate a physician or centre which would be best suited to help you.

Looking for a second opinion?

Due to the rarity of these conditions, many doctors have never heard of Lymphangiomatosis or Gorham’s Disease, let alone diagnose or treat the diseases.

Boston Children’s Hospital will review any case, adult or child, from around the world free of charge.  This is a great opportunity for you to have your case notes and imaging reviewed by their team of experienced specialists.  The process is a straightforward one and usually, a letter will be sent to either yourself or your doctor depending on who requested the review within two months.