Resources- Specific Diagnosis Card Catalog- Phenylketonuria (PKU)
Who to Contact
Children's PKU Network
3790 Via De La Valle, Ste 120
Del Mar, CA 92014
800-377-6677 (toll-free)
858-509-0767
858-509-0768 (fax)
E-mail: pkunetwork@aol.com
Children's PKU Network is a non-profit agency founded in 1991by 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.
National PKU News
6869 Woodlawn Ave. NE #116
Seattle, WA 98115
(206) 525-8140
(206) 525-5023 (fax)
E-mail: schuett@pkunews.org
Web: www.pkunews.org
National PKU News is a non-profit organization located in Seattle, Washington. It is dedicated to providing up-to-date, accurate news and information to families and professionals dealing with phenylketonuria. I started the organization in the Spring of 1989, after 16 years as nutritionist for a large PKU clinic in Madison, Wisconsin. The organization relies on generous donations from subscribers to continue thriving (all donations are tax-deductible for US residents).
National PKU News now has over 2000 subscribers who receive the organization's newsletter. Most subscribers are from the US, but an increasing number are from other countries (35 countries are now represented among subscribers, from Canada, Western and Eastern Europe, South America, East Asia, and the Middle East). Subscribers include parents, young adults with PKU, professionals, grandparents, relatives, and other persons connected to families of affected persons. Subscribers also includes some families of children with other inherited metabolic diseases requiring a low protein diet. Please see the section "What is the newsletter?" for information about newsletter content.
In addition to publishing the newsletter three times a year, I also produce and publish educational materials for PKU such as the Low Protein Food List and various cookbooks, including Low Protein Cookery for PKU. I also respond to thousands of questions and requests from subscribers via telephone, letters and e-mail messages.
Where to go to Chat with Others?
PKU-support
This is a world wide support group for carers & people with Phenylketonuria
PKU Listserv
The purpose of this list is to provide a vehicle for communication among families of children
born with (PKU), for young adults with PKU, and for professionals
treating PKU. The purpose of the list is to share experiences in managing PKU, specifically sharing cooking tips, low protein recipes, issues related to diet management, low protein food sources, and
information about other support groups. This list is a forum for families to share opinions, advice
and experiences with PKU treatment.
Learn More About It
Phenylketonuria article and bibliography
from OMIM
Links
National Soceity of PKU - United Kingdom
Minnesota PKU Foundation
For Teens and Young Adults
PKU Support Group of Florida Home Page
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