PKU (phenylketonuria)

Phenylketonuria (PKU)

Children's PKU Network (CPN ): 1520 State St.,Suite #240; San Diego, CA 92101; Phone: (619) 233-3202; Fax: (619) 233-0838; E-mail: magol@gte.net or pkunetwork@aol.com; Resources including videos and pamphlets for children

PKU Parents: 8 Myrtle Lane; San Anselmo, CA 94960; Phone: (415) 457-4632

National Phenylketonuria Foundation: 6301 Tejas Drive; Pasadena, TX 77503; Phone: 713-487-4802

National PKU News: 6869 Woodlawn Avenue NE - Suite 116; Seattle, WA 98115; 206-525-8140 - Voice/FAX; Contact: Virginia Schuett

Also See:

National organizations with information on genetic conditions or birth defects
Wellness Interactive Network, search for PKU
National Health Information Center (NHIC), search for PKU
History of phenylketonuria screening in the U.S., Louisiana State University, School of Law, Biotechnology Law Division

You and PKU booklet by Margaret Taylor and Virginia Schuett (Waisman Center on Mental Retardation and Human Development) (1978),

University of Wisconsin Press, 1930 Monroe St., Madison, WI 53711, Phone: 608-263-1101, Fax: 608-263-1132. $5.00 plus shipping and handling.
Texas camp for children with PKU of all ages, July 1998
Contact Barbara Dominguez 713-500-5765, Marcie Aguilar 210-704-2651, or Dr. Hope Northrup 713-500-5760

To locate a genetic counselor or clinical geneticist in your area:

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Genetics Education Center
University of Kansas Medical Center © 1995-2012
Debra Collins, M.S. CGC, Genetic Counselor, dcollins@kumc.edu

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