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Types of Galactosemia Recent Diagnosis Long-term Complications
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Let's help one another find our way forward.

Our foundation advocates for people with Galactosemia and their families. We connect families and support networking efforts between clinicians and researchers.

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2026 Galactosemia Foundation Conference

Upcoming Event – July 16, 2026 - July 18, 2026
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2024 Galactosemia Foundation Conference Details

 

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Advocating for a Treatment

The Galactosemia Foundation is urging the U.S. Food and Drug Administration (FDA) to incorporate the experiences and perspectives of people living with galactosemia in the agency’s review of govorestat (AT-007), the potential first-ever treatment for our rare genetic disease.

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Understanding Galactosemia

About Galactosemia

Galactosemia is a disorder caused by a genetic mutation that affects how galactose is broken down in the metabolic pathway.

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Recent Diagnosis

Whether your child was recently diagnosed or just trying to learn more about galactosemia, you’ve come to the right place.

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Resources

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

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Living with Galactosemia

Newborns

Babies are first diagnosed with galactosemia during the newborn screening process, which is done in all 50 states.

Newborns
Living with Galactosemia

Infants and Toddlers

Around this age, you may see early signs of developmental delays and speech problems.

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Living with Galactosemia

Primary School

Because galactosemia can impact how a child learns, they may need more support in school. Developmental delays may become more noticeable as your child begins school.

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Living with Galactosemia

Teens

The teenage years aren’t particularly easy on anyone, but they can be especially tough for teens with galactosemia. While they are growing and working to find their place in the world, they may feel restricted by their galactosemia diagnosis, due to complications they experience and/or food restrictions.

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Living with Galactosemia

Adults

Because galactosemia impacts everyone differently, some young adults will complete college and/or obtain stable employment. Others may have a hard time living independently because of worsening or new long-term complications.

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Latest News

Blog – February 24

Celebrate Rare Disease Week

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Blog – February 11

Action Needed: NIH Funding Cuts Could Impact Galactosemia Research

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Press Release – November 27

Govorestat, First and Only Potential Treatment for Classic Galactosemia, Does Not Receive FDA Approval

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