Founded in 1988 to fund research into the cause, treatment and possible prevention of Marfan syndrome, the Marfan Trust is the only Marfan charity in the UK. It funds its own laboratory, the Sonalee Laboratory, undertaking medical and analytical research so that more is known about Marfan syndrome and its management.
The results of its internationally recognised research enable doctors and surgeons to provide better treatment for patients in the short and long term.
The Trust is also committed to supporting those with Marfan syndrome 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. The building is located beside the Brompton Hospital which provides support to the Trust.
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 syndrome; 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.