The FOXG1 Research Foundation is proud to share that FOXG1 syndrome has officially been granted its own ICD-10-CM code — QA00151 — by the CDC, effective October 1, 2025. This milestone, years in the making, gives FOXG1 families long-overdue visibility in the healthcare system. With a dedicated code, clinicians can record FOXG1 in medical records, insurers have stronger grounds for coverage, and researchers can more accurately track patients — a powerful step forward for our community and for rare disease recognition.

Hope and love aren’t often mentioned in the same breath as scientific research, but they’re exactly what UB’s FOXG1 Research Center (FRC) was founded on. 

“Love for every individual living with FOXG1 syndrome and other neurodevelopmental disorders, as well as their caregivers, and hope that we can find a cure for FOXG1 syndrome and related disorders on the basis of scientific discoveries we are making,” Soo-Kyung Lee, director of the FRC and the parent of a child with FOXG1 syndrome, told a crowd gathered to celebrate the center’s official opening Tuesday. 

WILMINGTON, Mass.--(BUSINESS WIRE)--Jul. 30, 2024-- Charles River Laboratories International, Inc. (NYSE: CRL) announced today a collaboration with the FOXG1 Research Foundation (FRF) highlighting the patient advocacy group’s model to independently drive drug development through the clinical phase. The parent-led global organization driving the research to cure FOXG1 syndrome and related neurological disorders will collaborate with Charles River in a comprehensive gene therapy contract development and manufacturing organization (CDMO) agreement.

“Charles River is proud to work with the FOXG1 Research Foundation to advance its gene-therapy through clinical trials,” said Kerstin Dolph, Corporate Senior Vice President, Global Manufacturing, Charles River. “The FOXG1 patient population has an incredible unmet need, and we are looking forward to lending our expertise to FRF as they continue to trailblaze a path toward providing rare disease treatments.