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Category: Marfan Trust News
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Anecdotes and Antidotes
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Marfan Information Day: Press Release
20 Nov 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
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The Marfan Trust is registered in England and Wales under charity number 328070 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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