Alfie Milne Lymphangiomatosis Trust

Charity details

Registered address
49 Crown Crescent,
Peterculter,Aberdeenshire
AB14 0SQ

Phone
01224 735038

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Charity number
SC043165

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Alfie Milne Lymphangiomatosis Trust
Living with the Challenges of a Rare Disease

Alfie's Trust was set up to raise awareness and funds for research into two rare disease - Lymphangiomatosis and Gorham's Disease.  Alfie, born 7th June 2007, was diagnosed with lymphangiomatosis at 18 months.  This is a rare (potentially life-threatening) disease with no cure.  Very little is known about the disease, there is no support and no idea of what the future holds for Alfie.  The disease causes benign tumours to grow within the lymphatic system.  They can grow anywhere in the body and can cause life-threatening complications.  Alfie has the disease in his right leg and pelvic area, causing problems with his bowel, stomach, spleen, blood, bones and immune system.  His right leg is extremely swollen which causes problems with his mobility.  These tumours can be very aggressive, cannot be removed and can cause extreme nerve and bone pain.  

After starting the campaign to raise funds and awareness in September 2011, Alfie's Trust became a registered charity in May 2012 and to date have raised of £200,000.  Research is vital in order to give those affected a future, and a support network offers patients and their families a chance to share experiences and gain strength in numbers.  Working with existing bodies, this is where Alfie's Trust aims to make a difference.

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