Members of the New England Consortium of Metabolic Programs have developed resources for educators who work with children & families affected by metabolic disorders.
Prenatal Education Resources – These resources were developed for prenatal educators to use in teaching expectant parents about newborn screening for metabolic disorders. Included are a screening guide, prenatal curriculum, guide for parents, and a newborn screening report card for newborn babies.
An Educator’s Guide to PKU – This guide is for teachers to help support children with PKU at school. Developed in the Divisions of Metabolism and Genetics at Boston Children’s Hospital, with input from teachers, students, and parents, the guide includes helpful information about low-Phe nutrition, common learning challenges, guidance for educators, resources to find additional information and support, and more.
Galactosemia: Information for Educators – These online and print guides are for teachers with students who have galactosemia, and feature information about teaching strategies, therapies, classroom environments, teaching technologies, and other resources.
An Educator’s Guide to Urea Cycle Disorders – This guide is for teachers and school nurses working with students who have urea cycle disorders (UCDs). It includes background information about UCDs, as well as in-school health care strategies, nutrition guidelines, ideas for academic support, and a parent-teacher-school-nurse communication planner.
An Educator’s Guide to MCADD – This online and print guide is for teachers of students who have MCADD (medium chain acyl-CoA dehydrogenase deficiency). The guide offers information about the condition, signs and symptoms of a health crisis, treatment and prevention, and a summary of the latest research. It includes a section on how teachers can help their students avoid problems, with tips provided by parents of children with MCADD.
Genetics Education Materials for School Success – GEMSS – Genetics Education Materials for School Success (GEMSS) was developed by the Education & Outreach work group of the New England Genetics Collaborative (NEGC). Our group’s members come from clinical, public health, advocacy, and academic settings, and our goal is to promote awareness of and education about genetic conditions. We offer a range of educational and health materials for educators, health care providers, and families.