Our achievements so far have enabled us to do the following:


  • Funded the first International Conference in Science and Medicine on Generalised Lymphatic Anomaly (Lymphangiomatosis) & Gorham-Stout Syndrome. This was held in June 2013, in Atlanta and was attended by medical and research professionals from around the world. A grant of $25,000 (£16,565.00) was awarded to support 3 areas of the LGDA’s work – the medical conference, patient and doctor guides and the upkeep of the patient registry.


  • $8,286 (£5,000) was granted to the Lymphangiomatosis and Gorham’s Disease Alliance towards a patient conference in Dallas where 40 families from around the world attended the conference to hear presentations by 16 doctors, scientists and researchers.
  • £6250 was granted to Great Ormond Street Hospital in London to part-fund initial genetic research into Lymphangiomatosis.


  • $21,000 (£13,886.82) was granted to the (LGDA) to:
    • Maintain and expand the LGDA’s International Patient Registry , and
    • Hire a full-time Director of Patient Programs/Registry Coordinator for 1 year.


  • £2,000 was granted to Maria Gnarra, to cover a six week salary for a clinical research fellowship working in the Vascular Anomaly Clinic at Great Ormond Street Hospital.
  • A grant of $15,000 (£11453.60) was awarded to the LGDA to support the 2nd International Scientific-Clinical Research Conference which took place in Atlanta.