Free Galactosemia Family Support - National

About This Group

The Galactosemia Foundation, originally called Parents of Galactosemic Children, was founded in 1985 by a small group of mothers in New York. Galactosemia is a rare genetic metabolic disorder caught through newborn screening in all 50 states, and it requires strict lifelong dietary management. The foundation’s mailing list today includes more than 1,000 families, professionals, and clinics.

Ways to Find Support

The Galactosemia Foundation connects families with each other and with clinicians and researchers, and hosts a biennial conference that brings the community together in person. Families can also connect through the foundation’s Facebook page and other social media, and the foundation distributes resources like the Galactosemia Handbook to newly diagnosed families.

Who This Is For

Individuals and families affected by galactosemia, anywhere in the U.S. including Colorado.

How to Join

Call 866-900-7421 or email outreach@galactosemia.org to connect with the community and learn about the next conference. For more free options, see the Colorado support groups directory on The Group Guide.