We have moved

In October 2019, we made the decision to change our name and become the Lymphangiomatosis and Gorham’s Disease Alliance – UK. This wasn’t a decision made lightly. Please visit here for more details.

Alfie Milne, born 2007, is a boy from Peterculter, Aberdeen. Alfie suffers from an extremely rare and incurable disease called Lymphangiomatosis. At just 18 months, Alfie was diagnosed with this condition and his family were given little information and no guidance or support – simply because it was not available!

Learn more about Alfie's Story
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The limited support that is available comes from small organisations like Alfie’s Trust whose resources are continuously stretched. Organisations such as our own play an important role in improving the diagnosis of the disease through raising awareness, providing information and resources for the public, patients and medical professionals.

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We are often the main and only source for patients and families of information on the condition and support to newly diagnosed patients. Learn more about Lymphangiomatosis and how you can help us to make a difference to the lives of those who are affected by these conditions every day.


Alfie’s Trust is part of the Lymphangiomatosis and Gorham’s Disease Alliance – Europe. Many of the activities are planned and executed in cooperation with the LGDA – Europe and LGDA (US).

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Alfie Milne Lymphangiomatosis Trust is a registered charity in Scotland (SC043165)