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

Jun 12, 2019

Invitation to Marfan Association Supporters

Unfortunately, the Marfan Association UK, with whom we have worked closely for years, is closing down on 30th June 2019. The Charity Commission is appointing three new trustees for the Marfan Association to wind up its accounts. The Marfan Trust is happy to continue the work of…
May 7, 2019

Fatigue and Depression in Marfan Syndrome

By Dr. Anne Chld MD FRCP. Recently a 44yr old man with Marfan syndrome rang for advice as he was so tired at work, that he was falling asleep at his desk and in danger of being fired from his position.  General advice in this situation, which…
May 1, 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 from 1 October 2019. We wish Dan huge success in his new role.  “I am very pleased…
May 1, 2019

Helpline Summary

By Annette Ribeiro, Helpline Adminstrator. In the past 12 months the helpline has assisted a total of 121 people. Of these, 90 were received by email, and 31 by telephone.  Advice was given to all, and for 42 enquirers, specific advice was provided…
May 1, 2019

Sonalee Laboratory Update

Thanks to the tremendous generosity of our sponsors, so far we have been able to upgrade the following equipment, attend one of the ASHG Conferences and host a number of students to assist us in our vital research. PCR machine:…
May 1, 2019

Sonalee Laboratory Wish List 2019

The Sonalee Laboratory is sponsored by the Marfan Trust to undertake research in to Marfan syndrome. We urgently need your help to replace some of the laboratory equipment and buy new instruments to broaden our research. Our donation Wish List is below.  We…