National PKU News
www.pkunews.org
E-mail:
schuett@pkunews.org
Last update: March 2012
Related Links
Reference
- General Genetics and PKU Information
- Michigan PKU
- PKU Worldlink: Maps illustrating where people with PKU live
- Phenylalanine Hydroxylase Mutations Database (McGill University)
- Phenylketonuria: What is it? (Dolan DNA Learning Center)
- Technical Description of Phenylketonuria
- Phenylalanine Hydroxylase Deficiency (GeneClinics)
- Maternal PKU Collaborative Study
US Organizations
-
Arizona Network for
PKU and Allied Disorders (ANPAD)
- The Arc of the US (A National Organization on Mental Retardation)
- Children's PKU Network
- Indiana PKU
- Intermountain PKU and Allied Disorders Association
- Iowa PKU Foundation
- Michigan PKU Website
- Mid-Atlantic Connection for PKU and Allied Disorders
- National Coalition for PKU and Allied Disorders
- National PKU Alliance
- New England Consortium
- PKU Organization of Illinois
- PKU Parents of California
- Texas
- Texas: North Texas PKU Association
- University of Washington PKU Clinic
- University of Wisconsin-Madison: Waisman Center
International Organizations
Most of these websites are in the native language but some have English versions or sections.- Argentina (In Spanish)
- Australia: www.pkutree.com.au
- Australia (PKU Association of New South Wales): www.pkunsw.org.au
- Australia (MDDA)
- Belgium
- Brazil
- Britain: National Society for Phenylketonuria
- Britain: PKU Exchange
- European Society for PKU (In English; has helpful background information on PKU)
- France: Les Feux Follets
- France: Les enfants du Jardin (Covers various metabolic diseases)
- Germany (In German and English)
- The Global PKU Portal (in English and Russian)
- Hungary (in English)
- Norway (In Norwegian only)
- Poland
- Slovenia
- Spain
- Sweden
- Taiwan
Companies Distributing Products Useful for Low Protein Diets
- Applied Nutrition
- Cambrooke Foods (New low protein food company)
- Dietary Shoppe
- Dietary Specialties
- Ener-G Foods
- For My Diet (Low-protein goods and diet management tools)
- Glutino (Canada)
- Kingsmill Foods (Canadian low protein food company)
- Liv-N-Well
- Mead Johnson (National metabolic diseases clinic directory)
- Med-Diet
- Milupa North America
- Promin-PKU
- Q's Cookies
- Ross Metabolics
- Rich's (Rich's Richwhip Topping non-dairy creamer, etc.)
- Nutricia North America
- Specialty Food Shop (Supplier of low protein foods in Toronto, Canada)
- Tastee Apple Fiber (Use in low protein breads and other baked goods)
- Uncle Henry's Pretzel Bakery (Low protein pretzels - special order required)
- Vitaflo
Low Protein Recipes On-Line
- For My Diet (Low-protein goods and diet management tools)
- PKU Parents of California recipes
- Illinois PKU recipes
- Recipes by a parent
- Mid-Atlantic Connection for PKU recipes
- National Coalition for PKU and Allied Disorders Recipe Corner
- North Texas PKU Association recipes
- Recipes from Tracy Beck, PKU adult
- University of Washington PKU Clinic recipes
Other Links
- Social Security Disability Benefits and PKU, by John Dowling, Senior Editor of Social Security Disability Help, the web’s ultimate resource for guiding people with disabilities to the benefits they deserve.
- The PKU Challenge
- Tuxes for Tia: a Fundraiser for PKU Research
- Blazing a Genetic Trail (Gives basic information about genetics and genetics research. From the Howard Hughes Medical Institute.)
- Information about tetrahydrobiopterin deficiency, a rare disease mimicking PKU.
- The Museum of disAbility (Travelling exhibit about Dr. Robert Guthrie, developer of the newborn screening test for PKU. The exhibit includes a history of PKU newborn screening.)
- National Organization for Rare Disorders
- Tracy's PKU Page (A young adult with PKU shares her inspiring story)