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Incontinentia Pigmenti International Foundation



Address

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

Phone

2124521231

Fax

2124521406

Email Address

ipif@ipif.org

Description

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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