Marfan Trust

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Contact information, map and directions, contact form, opening hours, services, ratings, photos, videos and announcements from Marfan Trust, Nonprofit Organization, c/o 24 Oakfield Lane, Keston, London.

Founded in 1988, the Marfan Trust funds research into the cause and prevention of Marfan syndrome, a dominantly inherited cardiac disorder which also affects eyes and skeleton.

24/08/2026

Leaving an extraordinary legacy in his wake, Dr Reed Pyeritz’s loss will be felt throughout the Marfan community. A phenomenal physician, geneticist, scientist, teacher and mentor who dedicated his career to understanding the condition and improving treatment, Dr Pyeritz sadly died on 10 August. He once famously concluded: “30 years of research equals 30 years of additional life expectancy.”

Dr Pyeritz co-founded the Marfan Foundation 45 years ago and was a great friend to the Marfan Association & Trust when we started in 1988. Although his career was prestigious and far-reaching, he remained personable and human, visiting the UK for our Trust Information Days, even sleeping overnight in the cheerfully vacated bunk bed of Anne Child's 2-year-old son Ben! Read on: https://www.marfantrust.org/articles/dr-reed-e-pyeritz
The Marfan Foundation

23/08/2026

Revealing itself beyond the heart and aorta through a constellation of physical characteristics across the body, Marfan syndrome can also be recognised through its systemic features. These are brought together in the systemic score, part of the revised Ghent criteria (2010) for diagnosing the condition. The score assigns points to characteristic physical features outside the cardiovascular and ocular systems. So, what is the systemic score? https://tinyurl.com/vnk275yz

19/08/2026

The notion of a single “Marfan look” begins to unravel when you ask people with the syndrome how tall they are. In raising awareness, we alert people to the height and slender frame associated with Marfan and Loeys-Dietz syndromes. People often respond, somewhat crossly, to remind us that not everyone with these conditions is tall and thin. Rightly so! We therefore recently asked our community how tall they and their Marfan family members are, expecting perhaps a familiar pattern of height and slenderness, with a few outliers. What emerged instead was a fantastically unruly collection of measurements, shapes and stories! https://tinyurl.com/3yy2zhj6

17/08/2026

As research uncovers more, medical advice shifts - and so it is with exercise and Marfan syndrome. Once discouraged, exercise presents a curious paradox: it offers clear benefits while carrying real risks. People with Marfan and Loeys-Dietz syndromes were once cautioned against physical activity, but it has become increasingly apparent that moderate, regular exercise can be safely integrated into their lives. A newly published paper, co-authored by cardiologists from our advisory team, provides an overview of the latest guidance and the safest, most nuanced approaches to physical activity for people with Marfan syndrome. https://tinyurl.com/4wwtjck5

16/08/2026

Taking Marfan syndrome beyond its captive audience and into the pages of a prestigious American magazine is a fantastic thing! The founders of 101 Genomes Foundation, Ludivine Verboogen and Romain Alderweireldt, are interviewed by Roxanne Khamsi about their pioneering research to uncover Marfan modifier genes,that counter the cardiovascular implications of Marfan syndrome. Ludivine and Romain spoke at our Information Days in Birmingham and online. Here the link to their interview: https://lnkd.in/eBEz9hJX

15/08/2026

Today’s medical research brings a hopeful tomorrow closer. Over the past year, Jessica has been delving into the intricate relationship between FBN1 variation and disease, tracing its effects across the eye and aorta and in severe early-onset Marfan syndrome. Her work spans ocular disease, hereditary aortopathy and the most severe forms of Marfan syndrome, seeking to uncover patterns that may deepen understanding and improve diagnosis. https://www.marfantrust.org/articles/research-news

12/08/2026

A torrent of newsy news fills our latest edition of the Marfan Matters newsletter. Research advances, patient stories, medical titbits, conference news and symposia on the horizon jostle for space, alongside discoveries, conversations and glimpses of life across our community. Hide from the heat, find a cool corner and settle in with the Spring/Summer edition of Marfan Matters. https://tinyurl.com/y39vtwby

10/08/2026

Seemingly simple, standing up after lying down or sitting is a surprisingly complex, gravity-defying move. For people with POTS (Postural Orthostatic Tachycardia Syndrome), this everyday act can send the heart racing and leave them dizzy, light-headed or faint. A link between Marfan syndrome and POTS is not proven but a recent paper in the Journal of the American Heart Association reported a 4.9% incidence of POTS in MFS. https://tinyurl.com/yrm48n8r

09/08/2026

An eventful fundraising campaign, filled with remembrance, laughter and love culminated on Friday in a leap from the sky. Wearing their Marfan Trust T-shirts, Alex and Shannon faced their fears and jumped from a plane in memory of Maiya. And as a lovely coda to their adventure, they met a family on their way home who, spotting their tops, told them they had Marfan syndrome. What a wonderful reminder of why their fundraising matters so much! https://tinyurl.com/yt58zndm

Alex Cook Shannon Leigh

06/08/2026

A bright, brilliant talent cut short by an aortic dissection, Jonathan Larson died thirty years ago on the eve of the first off-Broadway preview of his hit musical Rent. He was just 35, and doctors believe he had undiagnosed Marfan syndrome. The Southwark Playhouse in London is now playing host to The Jonathan Larson Project, a gorgeous collection of Larson's lesser-known, unfinished and previously unheard songs. The Marfan Trust went along and loved it. https://tinyurl.com/t65nwvte
The Marfan Foundation

Address

C/o 24 Oakfield Lane, Keston
London
BR26BY

Website

http://www.marfantrust.org/

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