Keep up to date with the work of the Marfan Trust charity

May 27, 2020

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. Of the many conundrums confronted over the past week she has chosen to present a consultation on pain and pain management. Pain is an unfortunate symptom…
May 19, 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. Our Marfan Trust Helpline is more relevant than ever, and is operating seamlessly during this global pandemic, as Dr Child counsels everyone…
May 6, 2020

New Gene Discovered for Non-Marfan Scoliosis (Spinal Curvature)

The discovery of Genetic Mutation in TTLL11 Gene (which leads to ciliary defects and is associated with idiopathic scoliosis in a five-generation UK Family) will allow us to screen children of a scoliosis parent, to identify those who have inherited this gene…
May 6, 2020

How to Access the Drug Irbesartan

Following the successful completion of the AIMS Trial co-funded by British Heart Foundation and the Marfan…
May 5, 2020

AIMS Results Show Irbesartan is Effective in Marfan Syndrome

AIMS Trial Press Release: Results from the recent Aortic Irbesartan Marfan Study (AIMS) found that the drug Irbesartan reduces aortic dilatation in children and young adults with Marfan syndrome.     Summary…
Apr 30, 2020

COVID-19 Advice for Pregnant Women

This advice is based on a combination of available evidence, good practice, and expert advice. This advice is intended to reduce transmission of COVID-19 to pregnant women, and provide safe care to pregnant women with suspected or confirmed COVID-19.   The…