Founded in 1988 to fund research into the cause, treatment and possible prevention of Marfan syndrome - and more recently Loeys-Dietz syndrome - the Marfan Trust is the only in the UK dedicated to both conditions. It funds its own laboratory, the Sonalee Laboratory, undertaking medical and analytical research so that more is known about the conditions and their management.
The results of its internationally recognised research enable doctors and surgeons to improve understanding of both syndromes, and their management and treatment.
The Trust is also committed to supporting those with Marfan and Loeys-Dietz syndromes and their families and raising awareness of the condition, so that more people recognise the signs and more diagnoses are made in good time. This is crucial as over 18,000 people are affected by Marfan syndrome in the UK, with many more anticipated to be living with the condition undiagnosed. In 2019, the Trust merged with the Marfan Association (MA) following the MA's closure.
Originally located at St. George's University London, in 2019 the Trust moved to new headquarters in the Guy Scadding Building, Chelsea, hosted by Imperial College, London, before settling in Keston, Kent.
The Marfan Trust’s three main objectives are to:
1. Provide support and medical guidance to those affected and their families;
2. Provide educational literature on Marfan syndrome and all its aspects to the medical profession and the general public, thus raising awareness of the condition; and to
3. Fund medical research projects that aim to aid the diagnosis and treatment of Marfan syndrome patients.
Our website includes information on the medical aspects of Marfan and Loeys-Dietz syndromes; advice and guidance on living with Marfan syndrome; updates on our latest research projects and publications and ways to support the Trust’s important work.
