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The information contained in the Organizational Database (ODB) is provided for informational purposes only. There is no implied endorsement by NORD. NORD does not promote or endorse participation in any specific organization. The information is subject to change without notice. Every effort is made to ensure that the details for each entry are as current as possible.
Marfan Association UK
Address
Rochester House
5 Aldershot Road
Hampshire, GU51 3NG
United Kingdom
Phone
440-125-2810472
Fax
440-125-2810473
800 Number
--
TDD
--
Email Address
contactus@marfan-association.org.uk
Chapters
70
Website
http://www.marfan-association.org.uk
The Marfan Association UK is a service, research, and advocacy organization dedicated to supporting, educating, and researching Marfan syndrome. Marfan syndrome is an inherited disorder that affects the connective tissues of the heart and blood vessels (cardiovascular system). Established in 1984, the Marfan Association works with affected individuals, family members, specialists, researchers, general practitioners, and other medical specialists in the support role. Consisting of 1,600 members and 70 support groups, the organization produces educational materials including a self-titled newsletter, reports, brochures, fact sheets, and a directory. Program activities sponsored by the organization include awareness meetings, which are underway nationally on a continuing basis (a Marfan text is provided as appropriate) and support meetings, which are planned in its offices. The organization works to improve the effectiveness of the Marfan Support Network and provides translations of some materials in Spanish, Greek, and Russian.
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