Browse the resources below...

...or choose one of these options.

Information leaflets

Browse our information leaflets.
Information leaflets

Local Marfan/Loeys-Dietz
In-Person Support Groups

Meet others similarly situated
and have a conversation.
Click here to find your local group

Related Groups & Organisations

Connect with others having a similar experience and learn more.
Find a related organisation/Facebook Forum

Helpline

Call on + 44 (0)333 011 5256

Email us or find us on Facebook, X,
Instagram or Linkedin.

Guide to Loeys-Dietz Syndrome

1 Jun 2026

What is Loeys-Dietz Syndrome?

1 Jun 2026

Rachel's Story

Mental Health Awareness
15 May 2026

Diagnosis and Management in Childhood

21 Apr 2026

A Patient's Perspective on Navigating Benefits

by Sydney Heighington
20 Apr 2026

Marfan Syndrome v Hypermobile Ehlers-Danlos Syndrome

15 Apr 2026

Exercise & Marfan Syndrome

New Recommendations
30 Mar 2026

Results of Our Nationwide Survey

2 Mar 2026

Connor's Story

Navigating heart surgery
14 Jan 2026

Talia's Story

14 Jan 2026

Wayne's Story

From misdiagnosis to diagnosis
14 Jan 2026

How to Approach a Diagnosis

How to approach securing a diagnosis of Marfan Syndrome
24 Nov 2025

Genetics Appointment: How to Prepare

23 Nov 2025

The Genetics of Marfan & Loeys-Dietz Syndromes

A webinar with Professor Anand Saggar
22 Nov 2025

What Does a Family Diagnosis of Marfan or Loeys-Dietz Syndrome Mean for You?

22 Nov 2025

When The Answer Isn't Clear

Genetic Testing is not always conclusive
18 Oct 2025

Diagnosis & Treatment

A general overview
14 Aug 2025

Darcy's Story: My PEARS Journey

A first-hand patient experience
13 May 2025

Darren’s Story

13 May 2025

Rachel's Story

Expect the Unexpected
13 May 2025
Marfan Trust, a CIO registered as a charity in England in Wales with charity number 1198847 at: c/o 24 Oakfield Lane, Keston, Kent, BR2 6BY. Contact us at [email protected] or by phone on + 44 (0)333 011 5256
Log in | Powered by White Fuse