Diet Management:

How Much Phe — an amazing new resource by Virginia Schuett that allows you to look up the phe content of all of the foods listed in her book on any computer or handheld device.  A must for everyone.

Low Protein Food List for PKU by Virginia Schuett 

US Dept. of Agriculture (USDA)– the USDA database provides Standard References for the nutrients (including phe) of thousands of foods.

Some of my personal favorite vegetarian cook books:  

Perfect Vegetables by the Editors of Cook’s Illustrated Magazine

Vegetarian Cooking for Everyone by Deborah Madison

The Voluptuous Vegan and The Healthy Hedonist by Myra Kornfeld

The Modern Vegetarian Kitchen and Fresh Food Fast by Peter Berley

Sites with General Information on PKU: 

Phenylketonuria: What is it? great intro into the basics of PKU

National PKU News

National PKU Alliance

Patient Power Living with PKU  provides a series of online programs with various experts in the field

National Organization for Rare Disorders (NORD)

Texas Department of Health State Services provides some great information and a teacher’s guide

Canadian PKU and Allied Disorders Inc a great site with up to date research information

New England Consortium of Metabolic Programs

PKU Organization of Illinois

New England Connection for PKU and Allied Disorders

Children’s PKU Network

Mid-Atlantic Connection for PKU and Allied Disorders

Georgia PKU Connect

Minnesota PKU Foundation

UK – National Society for PKU

E.S.PKU – European Society for Phenylketonuria and Allied Disorders

PKU Association of NSW

Videos on PKU:


My PKU Life, one of a series of videos on – produced by Kevin Alexander, an adult with PKU

Meet Katy and her amazing family — an inspiring story about a beautiful young girl who was late diagnosed.  Have some tissues handy.

PK-Who Adults with PKU who were born before Newborn Screening

For Social Networking and Support:

The PKU List-Serv – over 1500 members.  To join, send an e-mail to  Type: subscribe pku-support-l and your full name in the text and you are ready to join the group.

Cook for Love’s Facebook page — over 2,000 members of extremely helpful parents and adults who are always ready to offer support, answer questions, etc.

PKU Worldwide Support Group — a very active and helpful group – Information on PKU and an active discussion board where you can connect with others with PKU.

If we are forgetting any sites, please drop us an e-mail and we will add to the list!

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