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
Marfan Trust
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.Marfan Trust - Joanne's Drop in
An online group where people can fellow Marfan and Loeys-Dietz supporters, ask questions, share worries and swap tips.Marfan Trust - Parents' Corner
An online group where people can meet similarly situated parents and discuss common concerns in a friendly, warm environment.Events associated with this provider:
20th of May 2025
Marfan Trust - Parents' Corner (online)
Online event for people affected by Marfan syndrome. For more information, visit the link provided.Hosted by - Marfan Trust