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.

More Information

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:

29th of May 2026

Marfan and Loeys-Dietz Syndrome Online Clinics

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 currently run on a fortnightly basis. For more information and to book a free place, click the link provided.

Hosted by - Marfan Trust

6th of June 2026

Marfan Trust Empowered Relief (online)

An opportunity to learn effective pain management skills that help you regain control, reduce suffering, and move forward with greater confidence and resilience. More information For more information, click the link provided.

Hosted by - Marfan Trust