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

Oct 9, 2018

Marfan Trust Project Costs Wish List

Can you help the Marfan Trust meet the following annual costs so it can continue it's vital research:    Laboratory Costs Salaries: £52,000  Consumables: £38,000 Medical Student Summer Scholarships x 3 @ £1,100 each (naming…
Oct 9, 2018

Marfan Patient Information Day – Southampton 7th July 2018

By Ed Stilliard, Journalist People from across the country came to a Marfan meeting in Southampton to talk about being affected by the condition.  Whether they have been diagnosed with the condition,…
Oct 9, 2018

Research Update Autumn 2018

AIMS Trial  The Aims trial has now been completed and was presented at the European Society of Cardiology in late August 2018, and published in September. A summary is published in News section of the websiter. Many thanks to all concerned. It has been a great success.…
Oct 9, 2018

Incidence of Pneumothorax in Marfan Syndrome

Research by Saba Mahmoud, medical student, St George’s University of London    What is the correct incidence of pneumothorax (free air in the chest cavity that causes the lungs to collapse) in Marfan syndrome?  Lung complications…
Oct 9, 2018

Management of Pain in Marfan Syndrome

Research by Natasha Anieh-Benno, medical student, St George’s University of London   The Pain Questionnaire project mounted in the spring Marfan Trust newsletter 2018 produced an excellent response, for which we are grateful. Analysis…
Oct 9, 2018

AIMS Trial - Results Postive

Aortic Irbesartan Marfan Study (AIMS)   A big THANK YOU to all of you who participated in the national medication trial of irbesartan (a close relative of losartan). 192 Marfan syndrome patients volunteered, in 22 clinics…