Children's PKU Network
Organization URL(s)
pkunetwork@aol.comwww.pkunetwork.org
Other Contact Information
3790 Via De la Valle
Suite 120
Del Mar,
CA 92014
800-377-6677 (Voice - Toll-free)
858-509-0767 (Voice)
858-509-0768 (FAX)
Description
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.
Online Resources
- What is PKU?
http://www.pkunetwork.org/PKU.html
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.