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
- PKU (Phenylketonuria)
- 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 Phenylketonuriaprovides 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?
- Monitoring Blood Phenylalanine Levels at Home
Services, Resources, and Support
- 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.