Official Diagnosis Code: QA00.151

FOXG1 syndrome has an official ICD-10-CM code: QA00.151 (effective October 1, 2025).

This unique code provides families, clinicians, and researchers with an important tool for ensuring FOXG1 syndrome is properly recognized across healthcare systems.

Why it matters

For many years, children with FOXG1 syndrome were coded under a mix of broad or unrelated categories such as epilepsy, developmental delay, or hypotonia. This made FOXG1 syndrome essentially invisible in health data, which limited access to services and made it harder to:

• Justify insurance coverage for therapies, treatments, and interventions

• Track health outcomes consistently

• Build stronger research datasets and accelerate clinical studies

Now, with its own ICD-10 code, FOXG1 syndrome is formally recognized — giving families clearer pathways to care and giving researchers stronger data to drive progress.

For Parents & Caregivers

• Share QA00.151 with your care team. Ask your child’s neurologist, pediatrician, therapists, and hospitals to add it to all medical records and insurance claims.

• Keep it handy. Download the FOXG1 ICD-10 code card here (PDF link). Take a photo and save it to your favorites on your phone so it’s always ready at appointments.

• Stay informed. Consistent use of the code across the community makes FOXG1 more visible in healthcare systems and research.

For Clinicians

Please use QA00.151 in the medical record for all patients with FOXG1 syndrome. Consistent coding supports accurate epidemiology, improves access to appropriate care, and strengthens the data that will drive clinical research and treatment development.

Learn More

Read more about how our community worked to secure this milestone: FOXG1 Syndrome ICD-10 Blog Post →.