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.
3306 Bumann Rd
Encinitas, CA 92024 United States
The Children's PKU Network (CPN) is a non-profit organization dedicated to providing support and services to children with phenylketonuria (PKU), their families, and all those involved in the treatment of this disorder. PKU is a metabolic disorder characterized by severe mental retardation, seizures, and/or other abnormalities that may be prevented through early restriction of dietary phenylalanine. The network serves as a central operational base to assist in the gathering and dissemination of information on PKU and other related disorders, operates a national network hotline to provide PKU families with information about PKU clinics and support groups in their area, seeks to educate legislators concerning the needs of PKU families, and establishes programs for college scholarships, crisis intervention, and research. The Children's PKU Network also provides a variety of educational and support materials through its informational database, regular newsletter, reprints of medical journal articles, pamphlets, booklets, brochures, videos, and materials specifically for affected children.
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 the credit for the source (NORD) and NORD’s copyright notice are included on the printed copy. Any other electronic reproduction or other printed versions is strictly prohibited.
NORD's Rare Disease Information Database is copyrighted and may not be published without the written consent of NORD.