Galactosemia: Information for Educators

Galactosemia is a disorder of carbohydrate metabolism that affects about 1 in 60,000 children. Children with galactosemia may have difficulties with communication, comprehension of new concepts, and sensory-motor integration skills. They must adhere to a strict dairy-free diet. Although parents of children with galactosemia are often reluctantant to tell their child’s teacher about the condition, earlier intervention yields a better outcome for the child.

These resources are for teachers working with students who have galactosemia:

Understanding Galactosemia – an introductory guide for educators, featuring a basic description of galactosemia, suggested teaching strategies, classroom management ideas, and additional resources.

Galactosemia: Resources for Educators – a detailed guide for educators with in-depth information about galactosemia, about special challenges for students with the condition, and featuring information about therapies, classroom environment, lesson planning, teaching technologies, and other resources.

Developed at Boston Children’s Hospital by Hillary Goldfarb, MA, and Dr. Susan Waisbren, Director of the New England Consortium of Metabolic Programs.

Supported by the New England Genetics Collaborative and their cooperative agreement with the US Health Resources and Services Administration (HRSA), grant number U22MC10980.

Our thanks also to Parents of Galactosemic Children Inc., and to parents and participants on the project.