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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.

National PKU News


PO Box 43552
Montclair, NJ 07043 USA



Email Address

[email protected]


The National PKU News (NPKUN) is a non-profit organization devoted to providing news and information to all persons involved in the treatment of phenylketonuria (PKU). This is a rare metabolic disorder caused by a deficiency of the liver enzyme phenylalanine hydroxylase. Phenylketonuria is a severe progressive disorder that, if not treated early, can produce mental retardation. Founded in 1989, National PKU News publishes a newsletter three times a year and has approximately 2,000 subscribers from the United States, Canada, and 30 foreign countries. National PKU News also publishes educational materials regarding treatment of PKU. Food lists and cookbooks are also distributed by the organization.

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