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National Marfan Foundation

Contact Information

Carolyn Levering, Executive Director
22 Manhasset Avenue
Port Washington, NY 11050-3121

1-800-862-7326 (Voice - Toll-free)
516-883-8712 (Voice)
516-883-8040 (FAX)

Internet Resources

staff@marfan.org

www.marfan.org

Abstract

The National Marfan Foundation was founded in 1981 by patients and families of patients with Marfan Syndrome, a genetic disorder of the connective tissue. The organization has three goals: to educate patients, physicians, and the public about Marfan syndrome and related connective tissue disorders; to support affected people and their families; and to foster and develop research. The NMF holds an annual conference in the summer.

Publications

The Foundation publishes brochures and fact sheets about Marfan Syndrome and related connective tissue disorders. Serial publication: Connective Issues (newsletter)--news and information on the Foundation, the syndrome, and patients; Videos: Videos include: also "How Do Your Genes Fit?", a genetics education video featuring Marfan Syndrome as a case study; "Heart of the Matter," a description of Marfan syndrome and it's management for a lay audience; CME video on aortic dissection for emergency physicians and a 6 video series on the various medical manifestations of Marfan syndrome.

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Notes

Audit

Date Entered: 6/1/1997
Date Edited: 3/25/2013
Date Revised: 7/18/2006 12:12:09 PM
Health Referral Number: HR1927
Accession Number: DP91A0540

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