The Galactosemia Handbook

Navigating Galactosemia Life Stages

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New Resource for the Galactosemia Community Launches to Empower Families as They Navigate Lifelong Genetic Disease




The handbook presents information for each life stage of Type 1 galactosemia, with the aim of guiding patients and caregivers from newborn diagnosis through adulthood to help understand the disease lexicon, build a care team and educate their support network on the disease

Created by the Galactosemia Foundation and made possible through support from Jaguar Gene Therapy, the handbook was developed from clinical guidelines, peer-reviewed data, members of the galactosemia community and input from renowned galactosemia experts including physicians, researchers, a metabolic dietician and a speech-language pathologist