Category: Marfan Trust News

Heads, Hearts & Minds: Webinar Recording

The psychosocial effects of a diagnosis of aorto-vascular manifestations in Marfan syndrome
30 May 2024

International Patient Symposium: 31 August

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

International Women's Day 2024

Celebrating Dr Anne Child
8 Mar 2024

The Future for Marfan Syndrome

Marfan Awareness Month - Final Chapter
1 Mar 2024

Appearances Can Be Deceptive

by Ellie Musgrave
29 Feb 2024

Mr Ulrich Rosendahl

a new Patron of the Marfan Trust
27 Feb 2024

Friday Factoid: Fluoroquinolone Alert

Marfan Awareness Month
22 Feb 2024

Professor John Pepper Appointed as Patron

Marfan Awareness Month
20 Feb 2024

Marfan Awareness Month

Managing Marfan & Its Future
1 Feb 2024

Marfan Matters: Autumn/Winter Edition

A winter warmer to while away the long dark evenings. Download your copy today!
4 Dec 2023

The Psychosocial Aspects of Marfan Syndrome

Please complete our one-off questionnaire to help us help you
14 Aug 2023

Pectus Update

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

Marfan Matters: Spring/Summer Newsletter

Bursting with news ...
26 Jul 2023

Summer Student Research: Neonatal Marfan Syndrome

Interview with Elsa Harte
21 Jul 2023

Introducing our Nurse Specialist

Meet Joanne Jessup
17 Dec 2022

Do They Or Don't They?

Famous, and Famously Fictional, Folk with Marfan Syndrome ...or something similar
15 Mar 2022

Dr Child's Casebook: Where to Go?

A new diagnosis in the family prompts a big question
29 Sep 2021
Members only

Helpline ... a Lifeline

by Victoria Hilton
25 Jun 2021

Research in the Sonalee Lab

by Dr José Aragon-Martin
25 Jun 2021

Breaking News ... Results of the COVID-19 Pandemic Questionnaire

by Mohamed Abdelrazek, Thomas Whittaker, Dr José Aragon-Martin, Dr Anne Child
25 Jun 2021

Fundraising in Tricky Times

by Gurpreet Madan
25 Jun 2021

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

‘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

Fundraising Update Winter 2020

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

Marfan Research Continues

The Sonalee Lab wants to reassure everyone that we have not stopped working on our Marfan research programme
26 May 2020

Marfan Trust Update

Marfan Trust is working hard to operate the organisation as normal to continue to provide support and advice
18 May 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

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

Marfan Association Merges with Marfan Trust

​The Marfan Association has sadly closed down
27 Nov 2019

Trustees' Message

At the Royal Brompton Hospital in Chelsea is the Guy Scadding Building, the new home of the Marfan Trust
27 Nov 2019

All Change for Marfan Trust Team

Along with our office move, the Marfan Trust Team has changed and will continue to evolve further.
20 Nov 2019

BHF Award Goes to Dr Anne Child

The British Heart Foundation recognised Dr Child’s contribution, in the Heart Heroes Award category
20 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

We're Hiring

The Marfan Trust is looking to hire a Fundraising Manager. Could it be you?
30 Oct 2019

Invitation to Marfan Association Supporters

The Marfan Association to close on 30th June 2019
12 Jun 2019

Sonalee Laboratory Wish List 2019

The Sonalee Laboratory is sponsored by the Marfan Trust to undertake research in to Marfan syndrome
1 May 2019

Trustees Report Spring 2019

Although 2019 finds our Chairman Dr Michael Carr unfortunately indisposed, it is business as usual for the Trust and the Trustees
1 May 2019

Helpline Summary

In the past year the helpline has assisted 121 people
1 May 2019

Sonalee Laboratory Update

We have been able to upgrade lots of equipment, attend one of the ASHG Conferences and host a number of students
1 May 2019

Research Director Appeal

Help the Marfan Trust launch its appeal for £300,000 with a bang this #MarfanAwarenessMonth
5 Feb 2019

Mince Pies for Marfan

Yummy fundraiser to get your teeth into
27 Nov 2018
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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