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.
Incontinentia Pigmenti International Foundation
30 East 72nd Street
New York, NY 10021
The National Incontinentia Pigmenti Foundation is a national, non-profit organization that was founded in 1995. Guided by a scientific advisory council, the foundation is comprised of affected individuals, physicians, educators, parents, relatives, and volunteers, all of whom are interested in taking a leadership role in supporting research, education, and funding for incontinentia pigmenti (IP). IP is a rare genetic disorder affecting the skin, hair, and teeth. Symptoms may vary greatly in severity from person to person, even within the same family. In some cases, neurological complications, including seizures and/or mental retardation, can occur as a consequence of IP. The mission of the Incontinentia Pigmenti International Foundation is to encourage and support research on IP and to provide family support and education. The organization publishes a newsletter, maintains a national database of health professionals who are experienced with IP, provides referrals, and offers emotional support and the sharing of resources. In addition, the foundation seeks to provide the medical care community with relevant medical information on IP; create awareness of IP on a worldwide basis; and collect and catalogue medical articles on IP.
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.