Hello I'm Alfie
and I suffer from Lymphangiomatosis.
Alfies Trust aims to raise funds for research and patient support to help those suffering from Lymphangiomatosis and Gorham's Disease around the world. Very little public charitable funding is available to support research into rare diseases such as Lymphangiomatosis.
Learn More about our fundraisingAlfie Milne is a 9 year old 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
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.
Read more on patient support
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.
Learn more about Lymphangiomatosis
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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News & Events
- LGDA Spring Newsletter
- #Get Involved – Rudy Study UK
- Support your ‘RARE’ on Rare Disease Day
- Important Information – Expert Clinics available for patients with GLA/KLA/GSD.
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- A Small Fish in a Large Pond
- Danielle takes on the Yorkshire Three Peaks