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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.
European Marfan Support Network
a/k/a: EMSN
Address
Marfanforeningen co/ FFO
PB 4568
Oslo, N 0404
Norway
Phone
473-825-7048
Fax
--
800 Number
--
TDD
--
Email Address
info@marfan.no
Website
The European Marfan Support Network is a non-profit organization dedicated to serving as a liaison with Marfan Syndrome Parent Organizations across Europe. Marfan Syndrome is a rare inherited connective tissue disorder characterized by abnormalities of the heart and blood vessels (cardiovascular system), skeleton, and eyes. Affected individuals may be unusually tall and thin, have abnormally large hands and feet, have malformations of the chest and spine, and experience weakness of the joints, ligaments, and tendons. Established in 1990, the Network is committed to ensuring the availability of current medical information for affected individuals, family members, physicians, and other health care professionals; encouraging effective medical management; and promoting research towards a cure for the disorder. The organization also engages in patient advocacy, offers patient networking services, has support groups, produces an annual magazine entitled "In Touch," and offers written materials in several languages including Spanish, French, German, Italian, and Russian. The European Marfan Support Network also has a web site on the Internet at
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