Marfan Association UK

Marfan Association UK

Marfan syndrome is one of the more common disorders of connective tissue that can affect the Eyes, Skeleton, Lungs, Heart and Blood Vessels, and may be life-threatening. The effects of Marfan syndrome varies between individuals, some people only being mildly affected.

Marfan syndrome is a hereditary disorder in 75% of cases whilst being spontaneous in the other 25%. This means that if a parent has Marfan syndrome, there is a 50/50 chance of each child not inheriting the Marfan gene. The Marfan gene was discovered in 1990 and in 1991 a deficiency was found in the glycoprotein, fibrillin. This initiated many research projects and diagnosis has improved because of the results achieved.

Through the work undertaken by the Marfan Association UK, in conjunction with a large number of medical professionals over many years, much has been learned about Marfan syndrome. Greatly improved medical management and surgical techniques are now available which are improving the lives of Marfan patients around the world.

Regular monitoring and a sensible life-style are essential.

  • The Marfan Association UK was founded in 1984.

    Little was known about Marfan syndrome and its effects on patients and family members at that time.

    Our goal was to increase awareness amongst the medical profession, thus saving lives through early diagnosis, whilst providing support for patients, their families and medical professionals around the world.

    Our three main objectives are

    Support, Education and Research.

    In order to achieve the best for our members we work on a national basis while working closely with colleagues around the world.

    We support those with Marfan Syndrome and their families…….We are aware that the unaffected family members may also need help to “come to terms with MFS”.

    A National Marfan Support Network is available.

    We educate by distributing updated Marfan text to lay and professional sectors, holding and participating in School and Hospital meetings around the country.

    Early diagnosis is vital – we believe this is achieved by spreading  information widely.

    A Publications List is available covering the many aspects of MFS.

    We research by undertaking, sponsoring, and participating in, national research projects.

    Already the gene has been discovered.

    Our Mission Statement

    To improve and prolong the lives of people with Marfan syndrome.

    Our Red Heart Logo

    The M of Marfan is represented by the red heart logo which contains breaks that symbolise aortic dissection.

    Our Mascot “Marf” The Giraffe

    Has been chosen because the giraffe is so tall and appealing and may suffer similar medical problems.

    Our Slogan

    “Support for Today with Tomorrow in Mind”

    Is to show that although we implement “tactical” solutions for patients now, we shall never lose sight of the “strategic” goals that will benefit future generations.

    Our Vision

    is to see automatic screening of patients and family members, followed by more preventive comprehensive patient care and treatment and an improved understanding of Marfan syndrome and its impact on daily living – at home – at school – at work and at play.

    A single abnormal (mutant) gene on Chromosome 15 causes the condition. This abnormal gene controls production of fibrillin, a very fine fibre in connective tissue throughout the body (the “glue and scaffolding of the body”). Most of the time this gene is inherited from a parent who is also affected. However, about 25% of the cases occur when the abnormal gene appears in an egg or a sperm (a spontaneous “new” mutation) producing an affected child from two unaffected parents.

    Marfan Syndrome is inherited as an “autosomal dominant” condition. This means that someone with Marfan Syndrome has a 50-50 chance that each offspring will inherit the condition, regardless of sex. On average one in ten affected children are seriously affected.

Contact Marfan Association UK

We are here for you!
If you have questions about Marfan syndrome, or wish to become a member and be invited to forthcoming events
click on the link below to email us

contactus@marfan-association.org.uk

Or you can contact us at our head office
Marfan Association UK
Rochester House
5 Aldershot Road
Fleet
Hampshire
GU51 3NG
Call us
Telephone Number +44 (0)1252 810472
Fax Number          +44 (0)1252 810473
Answer Phone       +44 (0)1252 617320

 

 

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