Keep up to date with the work of the Marfan Trust charity

Nov 27, 2019

Marfan Association Merges with Marfan Trust

The Marfan Association has now sadly closed down. In collaboration with the Marfan Association trustees, we welcome Marfan Association supporters to transfer their support to the Marfan Trust. We are especially grateful to Marian Mason, Association Administrator, and the three new trustees appointed…
Nov 27, 2019

More Choice for Marfans patients with New "External" Wrap Technique

Personalised External Aortic Root Support (PEARS), a new external ‘wrap’ technique for treatment of ascending aortic aneurysm, is gaining support worldwide. Its benefits include low surgical risk and rapid recovery time which provide more choice for Marfan syndrome patients.
Nov 27, 2019

Trustees' Message

Nestling among the medical research institutes that surround the Royal Brompton Hospital in Chelsea is the Guy Scadding Building, the new home of the Marfan Trust; my first visit found Dr. Child happy in her new office.    Arriving this autumnal day I reflected…
Nov 20, 2019

All Change for Marfan Trust Team

Along with our office move, the Marfan Trust Team has changed and will continue to evolve further. With much sadness, we waived goodbye to our Fundraiser/Administrator Janet Gomes in May. Janet had to leave suddenly due to the serious illness of a close relative. We would…
Nov 20, 2019

Advice for Teenagers with Marfan Syndrome

This year we are focusing on problems of young adults. We recently received the following plea for support from the anxious parent of an affected teenager.     Parent Question Dear Marfan Trust, Our wonderful…
Nov 20, 2019

AIMS Study Paper Accepted for Publication

The Marfan Trust is delighted to announce that it has had an important paper accepted for publication based on its ground breaking Aortic Irbesartan Marfan Study (AIMS). The study, co-funded by the Marfan Trust, the British Heart Foundation and the Marfan Association will be published in the Lancet…