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Supporting families with Galactosemia

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Resources

The foundations on the frontline

The Galactosemia Foundation

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

Galactosemia Association of Midwest America (GAMA)

This regional advocacy organization serves families in the Midwest, United States. Founded by a small group of parents in Illinois, their mission is to educate families living with Galactosemia and further research about the condition.

Take care

Caring for yourself and your loved ones

People living with or loving someone with Galactosemia can likely agree that it's important to take some personal time to rest and refresh before setting out on the next adventure. These resources can help you and your family recharge physically and emotionally.

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Mindful breathing

Take a breath with this neuroscience-based breathing exercise.

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Guided meditation

Recenter your mind with some free guided meditation.

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Connect with the community

Connect with folks who understand what you're going through.

Things to remember

Practicing self-care restores balance and focus, which can make you more effective in your daily life.

More resources

Information about childhood development with Galactosemia

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.

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Act early

Learn the signs. Take action.

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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.

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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.

Teachers
Healthcare Professionals

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Teacher's guide to Galactosemia

A guide for educators about the basics of Galactosemia.

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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.

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Navigating the Individualized Education Program (IEP)

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

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