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’s disease (GSD) and/or lymphangiomatosis (GLA) with bone involvement.

The Rudy Study aims to transform clinical care for participants through patient-driven research. The Rudy Study is a national network of doctors, researchers, patients and families working together to improve the understanding of rare diseases and develop new tests and treatments.

For more information check out their website. You may have received an email already because you have been identified by the LGDA registry as a potential candidate for the Study. If you didn’t receive an email and you think you or your child may qualify for this study, then please get in touch.

Find out more about the Rudy Study