The Lowe Syndrome Trust

Founded in 2000, The Lowe Syndrome Trust is a charity based in London, United Kingdom working on health, medical research, disability.

The Lowe Syndrome Trust is a UK registered charity founded in June 2000 as the only UK charity for Lowe Syndrome, a rare genetic condition caused by mutations in the OCRL gene that affects the eyes, kidneys, brain, bones and muscles. The charity raises funds for medical research, funds research projects across the UK, Europe and the USA, and works with a Scientific Advisory Board to review research proposals. It also offers family guidance and support, including advice on benefits and NHS services, and advocates for government funding and policies to improve the lives of people with Lowe Syndrome. The charity works alongside other Lowe Syndrome associations internationally, including the Lowe Syndrome Association USA, and runs awareness work and events such as an international symposium.