What They do
Our research work covers the whole of the United Kingdom and the Marfan Trust is the only charity in the UK that primarily supports research into Marfan syndrome.The main objective of the Trust is to support medical research so that more is known about Marfan syndrome and its severity. The results of our internationally recognised research enable doctors and surgeons to provide better treatment for patients in the short and long term.
Suggestions for research projects come from patients who voice concerns about ageing early, planning to have normal children, wishing for a cure, wanting early diagnosis.
Every clinic patient may be asked to volunteer for ongoing projects which directly benefit them. Research results are communicated directly to patient and physician in charge.
The Trust has funded setting up of the Sonalee laboratory in which Marfan gene mutations provide the basis for correct diagnosis. It is a nationally and internationally recognised referral centre of excellence for Marfan syndrome diagnosis and management, with 3,000 UK families on a research database.
Educational literature and pamphlets have been provided for medical and lay audiences worldwide by our Research Group.
All their Trustees are either affected or have a close family member who is affected. The Trustees prioritise the research projects and decide which ones to fund.
Info about and from the Marfan Trust