Phenylketonuria (PKU): For Patients and Consumers

General Information

These sites offer general information on PKU for members of the public, including information on symptoms, testing, and prevention.

NIH
The National Library of Medicine (NLM) provides several resources:
- NLM’s Genetics Home Reference provides general information on PKU and pages on how to find a genetics professional in your area and inheriting genetic conditions.
- MedllinePlus has pages on PKU and serum phenylalanine screening.
March of Dimes
The March of Dimes provides fact sheets on PKU in two languages:
- PKU (Phenylketonuria) : English version
- Fenilcetonuria (Phenylketonuria): Spanish version
National PKU News
This nonprofit organization is dedicated to providing up-to-date news and information on PKU.
University of Washington
The Cristine M. Trahms Program for Phenylketonuria provides resources for families of children with PKU:
- Monitoring Blood Phenylalanine Levels at Home (PDF – 179 KB)
- New Parents' Guide to PKU (PDF – 406 KB)
- What is the Diet for PKU?

Mid-Atlantic Connection for PKU and Allied Disorders
This is a network of individuals and families affected by PKU.
National PKU Alliance
The alliance is a lay advocacy organization that advances PKU research, supports local PKU organizations, and raises awareness about PKU.

Please note: Links to organizations and information included on this page do not indicate endorsement from the NICHD, NIH, or HHS.