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

The 2nd International Medical Conference

Thank you to the Lymphangiomatosis and Gorham’s Disease Alliance (LGDA) and Lymphatic Malformations Institute (LMI) for organising the 2nd International Medical Conference on lymphangiomatosis and Gorham’s disease. Part-funded by Alfie’s Trust, this conference was to bring together leading clinicians/researchers with particular experience and interest in our two rare diseases. The purpose is to begin theRead 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

Alfie Update: January

Alfie started a new trial drug, Sirolimus, that some hospitals in America and Europe are trying in children with the disease. This drug in some children has seen a very positive response. Alfie has now been on it since the 21st September 2011. Things are going well. He is happier, sleeping better and more activeRead More

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