A number of state organizations and clinics host annual camps for children and families with metabolic disorders. Camps are a wonderful way to connect with others in the community and forge new friendships. To learn about Emory's Metabolic Camp please visit https://metcamp.net. Also visit the National PKU Alliance for a list of 2016 metabolic camps.
The STAR-G Project has put together fact sheets about disorders commonly screened for by expanded newborn screening. Learn about your diagnosis.
Newborn Screening Information
This document provides information for parents on how to obtain the expanded newborn screening blood test.
PKU Fact Sheet
Genetic fact sheets for parents of children with amino acid disorders, specifically phenylketonuria (PKU).
Medical Home Guide
Partnering with your Doctor: The Medical Home Approach. This is a guide for families with children who have genetic conditions. It is intended to help you and your family connect with your doctor, other medical professionals and caregivers through a medical home.
School Nutrition Information
This document provides guidance for school service staff to accommodate children with special dietary needs in the school nutrition program
Additional Internet ResourcesPhenylketonuria (PKU)
- What is TYR?
- Treatment for TYR
- The Network of Tyrosinemia Advocates (N.O.T.A.)
- Groupe Aide aux Enfants Tyrosinemiques du Quebec (GAETQ) (French)