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.


  • £2,222 was granted to the LGDA – E to translate the website and information brochures into a further 4 languages.
  • A contribution of £4,600 was granted to the LGDA to support the Million Dollar Bike Ride for Research. A fantastic opportunity to support this research initiative through the Orphan Disease Centre at the University of Pennsylvania (Upenn) where any money raised over $20,000 and up to $30,000 would be matched by UPenn.


  • £3,000 was used to support families with travel costs to attend the LGDA Patient and Family Conference in Dallas, USA and a further £783 was granted to the LGDA in support of funding the Patient and Family Conference.
  • A further 3 languages were able to be added to the website and the information brochures are now available in Russian, Polish and Turkish after a grant was funded to the LGDA – E for £2,000.
  • The first ever LGDA – E volunteers meeting took place in the Netherlands. Seven volunteers got to meet for the first time, face to face, to discuss the future of LGDA – Europe and its national charities. A grant of £500 helped to cover the costs of the venue, travel and accommodation.
  • Through collaborative efforts with our US and European partners, funding was granted to enable Dr Triana to join Dr Juan Carlos Lopez and his team as a Research Assistant at La Paz Hospital, Madrid. Alfie’s Trust contributed £2,616 to the first year of this two-year project.


  • Due to the success of previous years, £2630 was granted to support the LGDA in their participation in the Million Dollar Bike Ride for Research.
  • A further £4,220 went to the 2nd years funding of the Research Assistant, Dr Triana, at La Paz Hospital, Madrid.