News

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

Sep 6, 2017

Hotline News

A Cautionary Tale  Three months ago, a 45 year old Englishman emailed us for advice. He was diagnosed with Marfan Syndrome since childhood when his dislocated lenses were discovered. Where could he go to have his heart checked? The Marfan Trust Hotline advised GP referral to his regional…
Sep 6, 2017

Making Decisions When Starting a Family

Latest research on prenatal diagnosis in Marfan Syndrome pregnancies can help patients and their partners make decisions when starting a family acording to Carline Ryder-Dobson. Caroline is a fourth year student at St George’s University of London, and has spent the summer working…
Aug 22, 2017

Silent Auction 2017

Can you help the Marfan Trust raise much needed funds for continued research into Marfan Syndrome by donating prizes to us to use in our upcoming silent auction? Or perhaps you know an organisation/business owner/business manager or other person who could donate a prize to us? In…
May 30, 2017

Update and Diagnoses

Many people like to keep their medical condition to themselves.  However, 80 people with Marfan syndrome and their relatives, attended our Family Fun Day in April, which included one hour of presentations on the latest diagnostic approaches and ways to manage Marfan syndrome for children and adults.…
May 30, 2017

Q&A: Joint and Muscle Problems in Marfan Syndrome

Dr Anne Child and Professor Rodney Grahame - Explain All. Joint and muscle problems can affect a Marfan syndrome patient at any age. They can be managed both preventively and by choosing sports and lifestyle sensibly. Any exercise involving stretching may reduce pain. Pain relief can be provided… Read more
May 30, 2017

Interviews with Marfan Heroes

Mike Horgan from Salisbury, UK ran the London Marathon in aid of his partner Glen Price who suffers from Marfan Syndrome. We interviewed Mike to find out his tips on how to run a marathon and how he coped with the build up. Overall Mike raised £5,000 plus for the Marfan Trust! Well Done Mike! 1.   …