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Information leaflets

Local Marfan/Loeys-Dietz
In-Person Support Groups

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Related Groups & Organisations

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

Helpline

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Aortic Dissection

21 Oct 2026

Joining the Dots in Loeys-Dietz Syndrome

A new primer/handbook
21 Oct 2026

The Anatomy of the Aorta

21 Oct 2026

The Loeys-Dietz Experience

21 Oct 2026

Z Score

13 Aug 2026

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