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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

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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

What are the signs of Marfan Syndrome?

Knowing the signs of Marfan syndrome can save lives
10 Jul 2022

Marfan Awareness Month: February 2022

"Once seen never forgotten" Passing frequently unnoticed through GP surgeries and A&Es is a potentially life-threatening condition
1 Feb 2022

Bereavement Advice

This article gathers helpful pieces of advice to form our Guide to Grief
26 Apr 2020
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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