Children's PKU Network

Organization URL(s)

Other Contact Information

3306 Bumann Rd
Encinitas, CA 92024
1-800-377-6677 (Voice - Toll-free)
858-756-0079 (Voice)
858-756-1059 (FAX)


Children's PKU Network is a nonprofit agency founded in 1991 by the parents of a child diagnosed with PKU (Phenylketonuria). The agency offers support through various programs to assist families with newly diagnosed infants with PKU and other metabolic disorders. A referral service serves as a medium for sharing information on obtaining needed services. A Maternal PKU Express Pack is available to women with PKU. PKU is a rare metabolic disorder that affects approximately 1 in every 15,000 births in the United States. Although not curable, PKU is treatable by adherence to a strict diet, devoid of fats and aspartame.

Print Resources

Serial publication: Newsletter, quarterly--information on nutrition and diet, insurance coverage for PKU care, screening and other health programs related to PKU, and organizational news.

Review Date

Friday, Feb 20, 2009