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Marfan Research Continues
The Sonalee Lab wants to reassure everyone that we have not stopped working on our Marfan research programme
26 May 2020
Dr Child's Covid Casebook
Every day while ensconced in the comfort of her virtual consulting room Dr Child encounters a new conundrum posed by a member of our Marfan community.
19 May 2020
Members only
Marfan Trust Update
Marfan Trust is working hard to operate the organisation as normal to continue to provide support and advice
18 May 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
Members only
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
Members only
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
Members only
COVID-19 Advice for Pregnant Women
This advice is based on a combination of available evidence, good practice, and expert advice
30 Apr 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
Message from Marfan Trust Chair Michael Heath
In these times of uncertainty we are all having to adjust to what were unimaginable changes to everyone’s lifestyles
1 Apr 2020
On the Home Front at Marfan HQ
On the Home Front at Marfan HQ
30 Mar 2020
A Word from the Trustees
By Michael Heath, Chair of Marfan Trust Board of Trustees
30 Mar 2020
Marfan Trust Statement on COVID-19
As Coronavirus continues, the Marfan Trust would like to provide some guidance to our community
17 Mar 2020
Tribute to Dr Michael Carr, Former Marfan Trust Chair
By Anne Child MD FRCP
28 Feb 2020
Marfan Trust Now Fully Staffed
We’re delighted to announce that Victoria Hilton and Gurpreet Madan have joined the Trust as full time staff members
26 Feb 2020
Donate to us with Amazon Smile
Use Amazon Smile for all your Amazon Purchases and Amazon will donate to the Marfan Trust
6 Jan 2020
Trustees' Message
At the Royal Brompton Hospital in Chelsea is the Guy Scadding Building, the new home of the Marfan Trust
27 Nov 2019
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
Members only
Marfan Association Merges with Marfan Trust
The Marfan Association has sadly closed down
27 Nov 2019
Turn Old Postage Stamps into Donations
Did you know that used postage stamps can be sold to stamp dealers for cash to raise money for charity?
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
Members only
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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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