News

Category: Marfan Syndrome

A Life-Saving Poster

6 Jul 2025

Heat, Health and Marfan Syndrome

20 Jun 2025

Infective Endocarditis

13 May 2025

Interview with PEARS Pioneer, Tal Golesworthy

25 Year Anniversary
24 Mar 2025

Dr Child's Casebook: The Science of Supplements

15 Mar 2025
Members only

Reece's Story

26 Feb 2025

Marfan and the Heart

17 Feb 2025

Marfan Awareness Month 2025

Let's raise awareness of Marfan & Loeys-Dietz syndromes
31 Jan 2025

Sarah's Journey

20 Jan 2025

Research in the Sonalee Laboratory

24 Dec 2024

Marfan Information Day 2024

Recordings Available!
30 Oct 2024

World Mental Health Day

10 October 2024
10 Oct 2024

A Guide to the Eye in Marfan Syndrome

Our new booklet is out today
30 Sep 2024

European Society of Cardiology - New Guidelines

Paedia†ric Aortopa†hy & Marfan Syndrome
24 Sep 2024

Friday Fact: Z-Score

20 Sep 2024

Aortic Dissection Awareness Day

Hurtling back through the centuries to 1760 ...
19 Sep 2024

Study of CT Scans and Aortic Measurements

Aortic Dissection Awareness Week
18 Sep 2024

Aortic Valve

Aortic Dissection Awareness Week: 16 - 23 September 2024
17 Sep 2024

Congress of the Marfan Europe Network

Together We Can!
17 Sep 2024

Aortic Dissection Awareness Week

16 - 23 September
16 Sep 2024

Discussing Marfan Syndrome

Drs Nitha and Nayyar Naqvi on their careers & MFS
9 Sep 2024

Friday Fact - Advocating for your Child

30 Aug 2024

Friday Fact: Hypermobility

Let's discuss joint hypermobility
9 Aug 2024

Research in the Sonalee Laboratory

An update from Dr Aragon-Martin
8 Aug 2024

The Anatomy of the Aorta

8 Aug 2024

Lucy's Blog - Part 11

A new diagnosis and a new physio
15 Jul 2024

Dr Antoine Marfan

Bastille Day
14 Jul 2024

Friday Fact: Alcohol Awareness Week

5 Jul 2024

Tune in to Dr Child on The Life Scientific

Tuesday, 2 July at 9am on BBC Radio 4
1 Jul 2024

Friday Fact: Systemic Score

28 Jun 2024

World Pneumothorax Day 2024

24 Jun 2024

Friday Fact: Ghent Criteria

21 Jun 2024

Friday Fact: Marfanoid Habitus

14 Jun 2024

Friday Fact: Aortic Valve

What does it do?
7 Jun 2024

Friday Fact: Preparing for an Emergency

31 May 2024

Pectus Matters: Webinar Recording

28 May 2024

Friday Fact: 20th Anniversary of PEARS!

24 May 2024

International Patient Symposium: 31 August

Radisson Blu Edwardian, 9-13 Bloomsbury St London WC1B 3QD
23 May 2024

Friday Fact: Joint Pain in Marfan Syndrome

17 May 2024

Friday Fact: Kyphosis v. Scoliosis

What's the difference?
10 May 2024

Friday Fact: Pectus Problems

3 May 2024

Friday Fact: PEARS Procedure

What is it?
26 Apr 2024

Friday Fact: Sleep Apnoea

What is it?
19 Apr 2024

Friday Fact: Genotype v. Phenotype

What's the difference?
12 Apr 2024

Friday Fact: Infective Endocarditis

Order your alert card today
5 Apr 2024

Friday Fact: Ectopia Lentis

What is it?
29 Mar 2024

Marfan Trust Guide to Heart Surgery

The Marfan Trust Guide to Heart Surgery
28 Mar 2024

Friday Fact: Mitral Valve Regurgitation

What is it?
22 Mar 2024

Friday Factoid: Aortic Dissection

Signs and Symptoms
15 Mar 2024

Friday Factoid: Dural Ectasia

What is it?
8 Mar 2024

Friday Factoid: Pneumothorax

Sometimes it's the first clue ...
1 Mar 2024

Appearances Can Be Deceptive

by Ellie Musgrave
29 Feb 2024

Friday Factoid: Fluoroquinolone Alert

Marfan Awareness Month
22 Feb 2024

Lynsey's Story

Marfan Awareness Month
19 Feb 2024

Friday Factoid: ARBs v Beta-Blockers

What's the difference?
16 Feb 2024

Managing Height in Marfan Syndrome

How Tall is Too Tall?
15 Feb 2024

Friday Factoid: CT Scan v MRI

What's the difference?
9 Feb 2024

Sarah's Story

Marfan (and Loeys-Dietz!) Awareness Month
8 Feb 2024

Managing the Benefits System with Marfan Syndrome

Marfan Awareness Month continues apace
5 Feb 2024

Friday Factoid: Congenital v Genetic

What's the difference?
2 Feb 2024

Marfan Awareness Month

Managing Marfan & Its Future
1 Feb 2024

Driving with Marfan Syndrome

31 Jan 2024

Friday Factoid: Heart Attack v. Aortic Dissection

What's the difference?
26 Jan 2024

Friday Factoid: Echo v. ECG

What's the difference?
19 Jan 2024

Aortic Dissection Awareness Week: 17 to 23 September

Know the signs
18 Sep 2023

Pectus Update

A new approach to the treatment of pectus problems
26 Jul 2023

World Pneumothorax Day 2023

30 Jun 2023

Mitral Valve Regurgitation

What is it?
16 May 2023

Tom and Chloe

a beautiful story of love and loss
27 Apr 2023

Cairo-Mia's Story

Illustrating Marfan Syndrome
28 Feb 2023

Loui's Story

Appearances Can Be Deceptive
26 Feb 2023

Jonathan's Story

"If only I'd known"
22 Feb 2023

Marfan Awareness Pamphlet

Download our leaflet today
13 Feb 2023

Lucy's Blog: The Critique of my Marfan Physique

By Lucy-Alexandra Atkinson
27 May 2021

Martyn's Story: How Can I Help You?

Let's Start a Conversation about Marfan Syndrome!
22 Apr 2021

In Good Company

Marfan syndrome is writ large on the cinema screen, and lurks behind the sensational sounds of Broadway - here are three notable names
11 Feb 2021

Lost in Translation - Marfan Encyclopaedia

This article elucidates, delineates and celebrates marfanoid medicalise in a comprehensive list!
5 Feb 2021

Psychosocial Aspects of Marfan Syndrome

“Let Marfan syndrome be the passenger on your bus, not its driver”
10 Dec 2020
Members only

Diagnosis of Marfan Syndrome

​In her two-part Casebook Appearances Can Be Deceptive Dr Child discussed the misleading mimics and disguised carriers of Marfan syndrome
10 Sep 2020
Members only

Dr Child's Casebook: Appearances Can Be Deceptive – A Relative Anomaly. PART II

Making itself known in the skeletal system, Marfan syndrome is usually visible for all to see in its height supremacy
9 Sep 2020
Members only

Marfan Syndrome and Coronavirus FAQs

​As COVID-19 continues and scientists race for a vaccine, we live our lives under lockdown, reliant on government and medical guidance
16 Apr 2020

Advice for Teenagers with Marfan Syndrome

We recently received the following plea for support from the anxious parent of an affected teenager
20 Nov 2019
Members only

What is Marfan Syndrome?

25% of Marfan syndrome patients are the first one affected in the family.
30 Sep 2019
Members only

Fatigue and Depression in Marfan Syndrome

A 44 year old man with Marfan syndrome rang for advice as he was falling asleep at his desk
7 May 2019
Members only

Going in to Labour with Marfan Syndrome

So you’re pregnant with Marfan syndrome, and you’re tackling all the challenges that brings, that’s even before you’ve tackled the labour!
6 Dec 2018
Members only

What to Expect When You’re Pregnant with Marfan Syndrome

Whether you knew you had Marfan Syndrome before you got pregnant or you've just found out, you may be wondering what you should expect.
5 Dec 2018
Members only

Incidence of Pneumothorax in Marfan Syndrome

What is the correct incidence of pneumothorax (free air in the chest cavity that causes the lungs to collapse) in Marfan syndrome?
9 Oct 2018
Members only

Q&A: Joint and Muscle Problems in Marfan Syndrome

Dr Anne Child and Professor Rodney Grahame explain all
29 May 2017
Members only
Marfan Trust, a CIO registered as a charity in England in Wales with charity number 1198847 at: c/o 24 Oakfield Lane, Keston, Kent, BR2 6BY. Contact us at [email protected] or by phone on + 44 (0)333 011 5256
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