News & Events

Keep up to date with the work of the Marfan Trust charity, find out all our News, Events and research here.

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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

Chairman's Letter

Letter from the Chairman: Dr Michael Carr BSc (Hons), PhD, Cert.Ed, CBiol, MIBiol. Conference: Marfan Syndrome and Beyond: An Update on Aortopathy, Diagnosis and Management. Friday 21st October 2016. St George's, University of London. The Marfan Trust hosted this packed academic…
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.   …
May 30, 2017

Mandi's Story

Since October 2016 Mandi has been completing the 500 in 1 challenge. This includes the Bright 10 Mile Run (Brighton), the Great South Run, the Box Hill Tough (10k high climb hill run, Surrey), the Heartbreaker Marathon (26.2 mile new Forrest trail run), Cranliegh 15 mile, the Hundred Acre Half Marathon…
May 30, 2017

Hotline Appeal

This lifeline phone number is not NHS funded but relies on your donation so please give generously Click here for ways to make your donation. “My GP doesn't know anything about Marfan Syndrome” “I am a doctor in Afghanistan.…