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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.

Policies

8 Jan 2025

Chronic Fatigue

24 Nov 2024

Genetics Appointment: How to Prepare

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

Endocarditis Prevention

Endocarditis Prevention Advice & ICE Card
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

Medical Concerns

Medical problems, treatment & management
10 Jul 2022

Related Disorders

Rule out related disorders with a definitive diagnosis
10 Jul 2022

Starting a Family

Understand potential risks & options beforehand
10 Jul 2022

Useful Information - Other

Other Helpful Groups and Organisations
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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