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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
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
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
We're Hiring
The Marfan Trust is looking to hire a Fundraising Manager. Could it be you?
30 Oct 2019
What is Marfan Syndrome?
25% of Marfan syndrome patients are the first one affected in the family.
30 Sep 2019
Members only
Invitation to Marfan Association Supporters
The Marfan Association to close on 30th June 2019
12 Jun 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
Members only
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
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
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
9 Truths Only People with Marfan Syndrome Will Understand
Whether you’re newly diagnosed with Marfans or you’ve grown up with the condition, there might be a thing or two here that you can relate to.
20 Feb 2019
Research Director Appeal
Help the Marfan Trust launch its appeal for £300,000 with a bang this #MarfanAwarenessMonth
5 Feb 2019
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
Mince Pies for Marfan
Yummy fundraiser to get your teeth into
27 Nov 2018
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
Management of Pain in Marfan Syndrome
8 Oct 2018
Members only
AIMS Trial - Results Positive
AIMS trial results show that Irbesartan is well tolerated with very few side effects
10 Sep 2018
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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