Pause For Thought - The Power of Mindfulness

Pressing pause on modern life has offered the world significant pause for thought
3 Jul 2020

Dr Child's Casebook: Practice Dilemma

Is your GP surgery imparting clinical expertise, or misinformation and misdiagnosis characterised by a general lack of support?
1 Jul 2020
Members only

Dr Child's Casebook: To Jab Or Not To Jab During Covid-19

One patient asked on behalf of her teenage son and we have shared the exchange below while protecting the family’s identity
24 Jun 2020
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Dr Child's Casebook: Life After 50 for a Mature Marfan

With increasingly sophisticated treatment and awareness comes longevity of life as Marfan folk grow older with their syndrome
17 Jun 2020
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Life in Lockdown with Marfan Syndrome

As someone with Marfan syndrome I wanted to write something useful about what life has been like in lockdown during the coronavirus pandemic
16 Jun 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
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Dr Child's Casebook: Gut Feelings

​The fourth instalment of Dr Child’s Casebook sees our Medical Director encounter an unusual ramification of Marfan syndrome.
10 Jun 2020
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Marfan Trust Newsletter Spring 2020

​Download our Paper Newsletter Here
6 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

Dr Child's (COVID) Casebook – Back To School Special

​As we gingerly ease our way back into the world, schools are leading the way, with Reception, Years 1 and 6 returning on 1 June.
3 Jun 2020
Members only

Dr Child's Pain Management Casebook

​Our new weekly theme continues apace as Dr Child counsels from her ‘remote’ consulting room, responding to our busier-than-ever helpline
27 May 2020
Members only

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
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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