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.

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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.

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Marfan Trust - Parents' Corner

An online group where people can meet similarly situated parents and discuss common concerns in a friendly, warm environment.

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Events associated with this provider:

10th of April 2026

Marfan and Loeys-Dietz Syndrome Online Clinic

The Marfan Trust is offering people who are newly diagnosed with the condition free one-to-one online clinic appointments with a specialist nurse. The sessions last for 30 minutes and are available on 10th April, 24th April, 1st May and 15th May. For more information and to book a free place, click the link provided.

Hosted by - Marfan Trust