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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.

Incontinentia Pigmenti International Foundation

a/k/a: NIPF

Address

30 East 72nd Street
Suite 16
New York, NY 10021
USA

Phone

212-452-1231

Fax

212-452-1406

800 Number

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TDD

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Email Address

ipif@ipif.org

Website

http://www.ipif.org/

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.

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