Marfan Trust

Stuart's Story - A Unique Journey

Walking in the shadow of our namesake!

1 Apr 2021

Myths and Misinformation Debunked! The Vaccine, Explained

A recipient of the vaccine herself, Dr Anne Child dispels disinformation and sets things straight

18 Feb 2021

Christopher’s Story: Marfan Awareness Month

This is the story of Christopher whose Marfan syndrome was captured at an early age, allowing him to claim his condition

16 Feb 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

'Awareness Saves Lives: Wayne & Lewis' Story'

This is the story of Wayne and Lewis - of a life lost and a life shaped by Marfan syndrome

9 Feb 2021

Lost in Translation - Marfan Encyclopaedia

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

5 Feb 2021

Bereavement Advice

This article gathers indispensable pieces of advice forming a one-stop Guide to Grief

21 Jan 2021

Psychosocial Aspects of Marfan Syndrome

“Let Marfan syndrome be the passenger on your bus, not its driver”

10 Dec 2020

Fundraising Update Winter 2020

As with all charities, the Marfan Trust had to transform, innovate and adapt to the changing times.

10 Dec 2020

‘Remote’ Insight from our Chair

The Trust will be working with and for you, as we all get through this winter, the pandemic and look forward to more comfortable times

10 Dec 2020

Research Report

Dr José Aragon-Martin turned lockdown into ‘heads down’, honing his sequencing skills, analysing his datasets and submitting two manuscript

10 Dec 2020

Research As Empowerment!

When your past is a blank page you are left feeling powerless. This story highlights the need for more research and awareness of Marfan syndrome

4 Dec 2020

How Did The Sonalee Laboratory Come About

Although Sonalee’s Marfan syndrome was not recognised until later on in life, she felt its impact from an early age.

19 Nov 2020

How To Be Happy

Stop kidding yourself that you can control more than you actually can.

13 Nov 2020

Latest Statement on Covid-19 from The Marfan Trust

With the newly introduced Rule of Six, we assess what you can – and can’t! – do when meeting friends and family

11 Sep 2020

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

Straight up!

A momentous innovation in the surgical treatment of scoliosis was recently reported to our Facebook page

3 Sep 2020

The Long and the Short of it is...

….clothing doesn’t always “have you covered” when limbs are long and slender

6 Aug 2020

Dexamethasone – A Panacea?

From humble steroid to heralded superhero, Dexamethasone is a basic anti-inflammatory recently catapulted into the headlines

23 Jul 2020

Pause For Thought - The Power of Mindfulness

Pressing pause on modern life has offered the world significant pause for thought

3 Jul 2020

Gastrointestinal Disturbances in Marfan syndrome

A significant proportion of patients with Marfan syndrome (MFS) have gastrointestinal disturbances constituting irritable bowel syndrome (IBS)

11 Jun 2020

Marfan Trust Collaborates with Cambridge University

Frozen skin cell samples donated in the past by Marfan syndrome patients are being wakened up to test new medications in the laboratory

4 Jun 2020

New Gene Discovered for Non-Marfan Scoliosis (Spinal Curvature)

The discovery of Genetic Mutation in TTLL11 Gene will allow us to screen children of a scoliosis parent

6 May 2020

How to Access the Drug Irbesartan

Following the successful completion of the AIMS Trial the drug Irbesartan has been shown to be effective in delaying aortic root widening

6 May 2020

AIMS Results Show Irbesartan is Effective in Marfan Syndrome

Results show that the drug Irbesartan reduces aortic dilatation in children and young adults with Marfan syndrome

5 May 2020

COVID-19 Advice for Pregnant Women

This advice is based on a combination of available evidence, good practice, and expert advice

30 Apr 2020

On the Home Front at Marfan HQ

Our world remains in retreat. Streets stand silent. Offices sit still. Schools are shuttered. Modern Life has shut down

23 Apr 2020

On the Home Front at Marfan HQ

30 Mar 2020

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

'PEARS' is a new external ‘wrap’ technique for treatment of ascending aortic aneurysm, is gaining support worldwide

27 Nov 2019

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

AIMS Study Paper Accepted for Publication

The Marfan Trust has an important paper accepted for publication based on its groundbreaking study

20 Nov 2019

What is Marfan Syndrome?

25% of Marfan syndrome patients are the first one affected in the family.

30 Sep 2019

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

Supporter Achievements - Dan Hyde

Congratulations to Dan Hyde on the great achievement of being appointed as Director of Music at King’s College, Cambridge.

1 May 2019

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

Management of Pain in Marfan Syndrome

8 Oct 2018

AIMS Trial - Results Positive

AIMS trial results show that Irbesartan is well tolerated with very few side effects

10 Sep 2018

The Acceptability of Prenatal Diagnosis & Pre-Implantation

Latest research can help decisions when starting a family

6 Sep 2017

Update and Diagnoses

Latest diagnostic approaches

30 May 2017

Q&A: Joint and Muscle Problems in Marfan Syndrome

Dr Anne Child and Professor Rodney Grahame explain all

29 May 2017

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