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The foundations on the frontline

The Galactosemia Foundation

This nonprofit organization advocates for people with Galactosemia and their families. The Foundation connects families and supports networking efforts between clinicians and researchers.

Care Preparation Tools

Tools and resources for the care of
your children and loved ones

The journey through different life stages with Galactosemia can be overwhelming and confusing. These resources are designed to help you feel as prepared as possible throughout the journey. The Galactosemia diet instructions and the Galactosemia school guide have been developed to help make starting new school years or social activities simpler by providing important information to your child’s educators and caregivers. The Managing Galactosemia by life stage guide has been created to help you be prepared when consulting your metabolic geneticist.


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diet instructions

Help prepare your child’s educators and caregivers for their specific needs with this printable guide


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school guide

Find useful information to help prepare for your child’s development challenges at key life milestones


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Managing Galactosemia
by life stage

Be prepared for your metabolic geneticist visits with this printable guide

More resources

Information about childhood development

The Centers for Disease Control and Prevention (CDC) is a trusted source that can help you identify the milestones children typically reach as they grow.


Act early

Learn the signs. Take action.


Milestone tracker app

Download the Milestone Tracker app to help follow your child's progress.


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Discussion guide

Download these tips for talking to your doctor about developmental concerns.


Additional resources

More free resources in multiple languages can be found here.

Professional resources

Resources to share with teachers, doctors, and other members of your healthcare team

For many families, the care community lifting up children and adults with Galactosemia includes teachers and healthcare providers from a variety of specialties. These resources can help everyone get on the same page.

Healthcare Professionals


Teacher's guide to Galactosemia

A guide for educators about the basics of Galactosemia.


Understanding Galactosemia: Resources for educators

A resource for educators about Galactosemia.


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Guide to special food and nutrition needs in child nutrition programs

A downloadable presentation about nutrition programs for children with special dietary needs.


Navigating the Individualized Education Program (IEP)

A resource about IEPs, including the services and support offered.