Lymphangiomatosis Research at Great Ormond Street

GOSH has a Rare Dermatology Diseases Resource – An HTA tissue bank was set up in 2013 to help investigate very rare disorders where the cause is not known. Some genes for lymphatic conditions are known, however most are not yet known. Finding the root cause of Lymphangiomatosis would be very important step forward inRead More

Keep on Running – Brighton Marathon Here We Come.

Beata has been training hard over the last year to complete her first ever Marathon. On the 12th of April, Beata will take on the challenge of the Brighton Marathon raising funds for Alfie’s Trust. About a year ago her best friend’s son Bo from the Netherlands, aged 20 months old at the time, wasRead More

The Centre for Research into Rare Disease in Children

The Centre for research into Rare Disease in Children will be the world’s first centre dedicated to paediatric research into rare diseases. It is a partnership between Great Ormond Street Hospital, University College London and Great Ormond Street Hospital’s Children’s Charity. The building will sit adjacent to the hospital and UCL Institute of Child Health.Read More

Rare Disease Day 2015 – Did you know?

The 28th of February marks Rare Disease Day 2015, which aims to increase awareness of diseases like Alfie’s. Did you know: • 1 in 17 people will be affected by a rare disease at some point in their life. This amounts to approximately 3.5 million people in the UK. • 75% of rare diseases affectRead More

Alfie Update

Alfie continues to do well on his current treatment regime and we are working hard to maintain his mobility which has deteriorated over the last year. Alfie’s regular review at Great Ormond Street Hospital saw us in London in December. As well as being kept busy meeting with all the disciplines that are involved inRead More

Thank you to Jo Golder, Peterculter Golf Club & Dizzy’s

We have three people/groups to thank for their kind donations: Thank you to Jo Golder for putting our charity name forward to receive a donation of £1,000 through her work at Nexen Petroleum Ltd. The Ladies Section at Peterculter Golf Club kindly donated £100. Thank you ladies. Alfie’s Trust was nominated to receive the proceedsRead More

Team Alfie joins Aberdeen and Deeside Kiltwalk

  Alfie’s Trust is excited to be entering a team for the Aberdeen and Deeside Kiltwalk in June 2015. There are two walks to choose from, an 8-mile route or a 26-mile marathon. Both are along the Deeside Way and end with a celebration at Potarch. 26-milers start at the Duthie Park, 8-mile walkers startRead More

The Scottish Accordion Music Group raises money for charity

Thank you to the members and supporters of The Scottish Accordion Music Group for their kind donation of £500 to Alfie’s Trust. The music group play at events all year round throughout Grampian. Any funds that are raised over the course of the year are presented to worthwhile local causes. We went along on SundayRead More

Tyne and Wear Pathology Lab fundraise for Hollie

Thank you to the friends and work colleagues of Kim Hunter (mother of Hollie who suffers from Lymphangiomatosis) for raising £1,205 for Alfie’s Trust. At South Tyne and Wear Pathology Lab, they organised a day of selling cakes (and eating them) whilst wearing something pink because it is Hollie’s favourite colour. At the end ofRead More

Thank you for your Kind Donation

We would like to thank Mrs Barbara Church and her family and friends for raising £400 to go towards research into Lymphangiomatosis. Mrs Church’s great niece Hollie, who is only 5 years of age from Newcastle-upon-Tyne, was diagnosed with Lymphangiomatosis just this year. Hollie has over 150 bone lesions throughout her body. Despite the manyRead More

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