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Information leaflets

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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.

Maintaining the Health of Your Eyes

3 Apr 2025

Managing the Benefits System with Marfan Syndrome

3 Apr 2025

Marfanoid Habitus

3 Apr 2025

Pectus Problems

3 Apr 2025

Spring Statement: What Does This Mean For Marfan & Loeys-Dietz Patients?

3 Apr 2025

Systemic Score

3 Apr 2025

Policies

8 Jan 2025

Chronic Fatigue

24 Nov 2024

Information Guides

22 Oct 2024

Extra Help

Charity funding for people affected by Marfan & Loeys-Dietz syndromes
25 Sep 2024

Life Insurance

Insurance for those with a Connective Tissue Disorder
25 Sep 2024

Dressing Tall

The Long and Short of it is ...
11 Sep 2024

Travel Insurance Information

Specialist Travel Insurance and Insurers
5 Sep 2024

Regional Genetics Centres

Find UK and Republic of Ireland Regional Genetics Centres
21 Jun 2024

A to Z of Marfan Medicalese

This article elucidates and celebrates Marfan medicalese in a comprehensive list!
18 Jun 2024

Famous Folk with Marfan Syndrome

6 Mar 2023

Marfan Syndrome V. Loeys-Dietz Syndrome

6 Mar 2023

Diagnosis & Treatment

Early diagnosis and treatment is vital
10 Jul 2022

Living with Marfan Syndrome

Regular checks with specialists are key
10 Jul 2022

Marfan Syndrome in Children

Manage children's care via a paediatrician
10 Jul 2022
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
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