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.
Li-Fraumeni Syndrome International Registry
450 Brookline Ave.
Boston, MA 02215-5450
The Li-Fraumeni Syndrome International Registry (DfCI) is a non-profit health organization dedicated to compiling data concerning families with Li-Fraumeni syndrome and providing them with information regarding surveillance and intervention options. Li-Fraumeni syndrome is a familial disorder consisting of the appearance of early breast cancer. Established in 1969, the registry provides referrals to genetic counseling and other services and works to educate affected families and healthcare professionals. It provides a variety of educational and support materials, including a regular newsletter, videotapes concerning genetic testing, brochures, and fliers.
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NORD's Rare Disease Information Database is copyrighted and may not be published without the written consent of NORD.