Rare Disease Day 2018 – Research is key

‘In 2018 the theme was Research.  Research is key.  It brings hope to the millions of people living with rare diseases across the world and their families’. We are celebrating Rare Disease Day. Working together with Rebecca Stewart from Rare Revolution Magazine we have managed to get some great articles, including our own, in theRead More

Check out ‘Rare Revolution’ Magazine

Interested in ‘Rare’? Then subscribe to this fantastic magazine ‘Rare Revolution’. A great educational and inspirational read for anyone involved in the rare disease community. Please take a moment to check it out. ‘Rare Science’ Alfie’s Trust is excited to be featured in the ‘Rare Science’ section (page 58-61) of this issue. Along with ourRead More

Welcome to The Rudy Study

Alfie’s Trust, as part of the Lymphangiomatosis and Gorham’s Disease Alliance – Europe, is pleased to be part of The Rudy Study. This is a UK based study with an interest in understanding more about all aspects of rare diseases of the bones, joints and/or blood vessels. The study is open to patients with Gorham’sRead More

Clinical Research at GOSH

In February this year, Alfie’s Trust funded a 6-week Fellowship to allow Maria Gnarra to join the Dermatology Department at Great Ormond Street Hospital to work on clinical projects on paediatric vascular and lymphatic anomalies. Maria has kindly released this statement. I am an MD, PhD conducting basic and translational research on paediatric vascular anomaliesRead More

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

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

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