Marfan Trust

Marfan Trust

Charity information

Marfan Trust

The Marfan Trust work with people who suffer from a rare disease called Marfan syndrome, Marfan affects the heart, eyes and skeleton and if undetected life expectancy can be up to 31 years of age as sufferers can unexpectedly go into cardiac arrest. This is because Marfan syndrome can make the aorta around the heart dilate to over 5cm which can potentially be fatal.

We as a charity work in supporting sufferers by providing a friendly ear to listen to them and their troubles this makes them fe

Founded 1988

  • Mission statement

    Marfan syndrome was identified in 1896 by a French physician, Antoine Marfan. People with the condition are classically tall, slim, have very long fingers and feet, sometimes protruding or indented chests, short-sighted and often teased and bullied at school. The greatest threat to life however lies in the hidden system of the heart and blood vessels which are weak and can fail. Because of this the average life expectancy of someone with Marfan syndrome is still only 44 years.

    The Marfan Trust was founded by patients with the disease, determined to discover the cause and cure. Money raised is spent on increasing general and medical awareness, and funding vital research studies. We need improved medication and surgery to increase the life span of those affected.

  • Aims

    Marfan Trust aims to:

    • To make people aware of what Marfan syndrome is in the next 5 - 10 years
  • Overview

    Established: November 1988

    Registered Charity Number: 328070

    Board members: 6

    Full time staff: 4

    Part time staff: 1

    Volunteers: 6

    Phone number: 020 8725 2940

    Address: St Georges University London, Cranmer Terrace London SW17 0RE

    View charity accounts on the Charity Commission website
  • Medication in Marfan syndrome

    Urgent funding is required to support a national trial of 500 patients, with a serious li... More