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.
National Marfan Foundation
22 Manhasset Avenue
Port Washington, NY 11050
The National Marfan Foundation is a voluntary, non-profit organization dedicated to the support and education of people affected by Marfan syndrome and related connective tissue disorders. Families and individuals affected by Marfan syndrome, an inherited disorder of the connective tissue that may affect the skeleton, lungs, eyes, heart, blood vessels, and other areas of the body established the foundation in 1981. The National Marfan Foundation has a three-fold purpose: to support and promote research; to disseminate accurate and timely information about this condition to affected individuals, family members, and physicians; and to provide means for affected individuals and relatives to share experiences, support one another, and improve their medical care. To help meet these goals, the foundation sponsors research grants to investigators studying any or all disciplines involved in Marfan syndrome, and conducts annual conferences. It has a network of chapters, support groups, and contacts across the country and provides a variety of educational and support materials for affected individuals, family members, healthcare professionals, teachers, and other professionals. These materials include a newsletter called "Connective Issues," an annual research supplement, booklets, and a listing of thousands of articles and books on Marfan syndrome. Other informational materials include brochures, fact sheets, videos, resource manual and posters.
The National Organization for Rare Disorders (NORD) web site, its databases, and the contents thereof are copyrighted by NORD. No part of the NORD web site, databases, or the contents may be copied in any way, including but not limited to the following: electronically downloading, storing in a retrieval system, or redistributing for any commercial purposes without the express written permission of NORD. Permission is hereby granted to print one hard copy of the information on an individual disease for your personal use, provided that such content is in no way modified, and that credit for the source (NORD) and NORD’s copyright notice are included on the printed copy. Any other electronic reproduction or other printed versions are strictly prohibited.
NORD's Rare Disease Information Database is copyrighted and may not be published without the written consent of NORD.