Marfan Trust
Description: The Marfan Trust supports those with Marfan syndrome and their families; provides educational information to raise awareness of Marfan syndrome; undertakes medical research to enable better treatment for patients.
Weblink: http://www.marfantrust.org
Tel: 0333 011 5256
Email: info@marfantrust.org
Category: Third/voluntary Sector
Services Provided
Provides information and a range of literature about
Marfan syndrome. Members are also invited to various events organised by the association. There is a range of membership options. The basic 'Friends Membership' (which gives access to the
helpline, all online & social media resources & all standard e-news articles), is free.
An online group where people can fellow
Marfan and Loeys-Dietz supporters, ask questions, share worries and swap tips.
An online group where people can meet similarly situated parents and discuss common concerns in a friendly, warm environment.
