LGDA UK

Welcome to the Lymphangiomatosis and Gorham’s Disease Alliance–UK (LGDA -UK), previously known as Alfie’s Trust.

The Alfie Milne Lymphangiomatosis Trust became a registered charity in 2012 after Alfie, the son of Tracy and Mark Milne, was diagnosed with lymphangiomatosis at the age of 18 months.  At that time there was no support available nor research being carried out.  With Alfie in attendance as the face of the organisation, for the last nine years, the charity has been tirelessly fundraising.  Thanks to the support of the local community here in Peterculter, friends and family and patients from all over the UK, Alfie’s Trust is proud to have raised a phenomenal £311,000.  Alfie, now approaching his teenage years would like to take a step back out of the limelight to focus on ‘just being a teenager’.

As the Trust has developed, we work more and more with our European and American partners in the Lymphangiomatosis and Gorham’s Disease Alliance (LGDA).  Working together makes us stronger allowing us to pool resources – sharing and coordinating the workload to benefit our worldwide community.

With these factors in mind, in October 2019 the Alfie’s Trust Board agreed to change the charity name to align with our international partners, becoming the Lymphangiomatosis and Gorham’s Disease Alliance–UK (LGDA-UK).

As LGDA–UK, our aims and objectives remain exactly the same.  Our charitable status continues here in the UK and our Board of Trustees remains in place and still has final say over the spending of funds raised. Donations made to LGDA-UK on the shared LGDA–E website allow us to claim Gift Aid on donations received by UK taxpayers.   Our news and events will continue to be promoted through our UK social media page.

If you haven’t already, please read Alfie’s Story before continuing your journey to our new home on the LGDA–E website.

We want to thank each and every one of you for your support over the last nine years and we hope that you will continue to support us under our new name of Lymphangiomatosis and Gorham’s Disease Alliance–UK.

Changes to the website are ongoing – please bear with us whilst we make the transition.