FOXG1 Parents & Caregivers
You’re in the right place.
Wherever you are in your FOXG1 journey — a brand-new diagnosis, years in, or somewhere in between — you've found your family. We are a worldwide community of FOXG1 parents, and we are here for you.
If your child was recently diagnosed, start here. We'll help walk you through the things you will need to know.
Help Advance FOXG1 Research
There are multiple ways to support research for all FOXG1 families worldwide.
The most important step FOXG1 families can take to advance research and improve care is to register their child in the official global FOXG1 Patient Registry. This ensures the most accurate, up-to-date understanding of the syndrome—and our team is here to support you every step of the way.
Caring for Your FOXG1 Child
Created by parents, for parents—this evolving resources guide is here to help you navigate the FOXG1 and rare disease parenting journey.
FOXG1 Clinical Centers
Find the leading FOXG1 clinicians and clinical centers around the world.
Ways to Get Involved
FOXG1 Gene Therapy
The FOXG1 gene therapy patient clinical trial is beginning in 2026.
Shop for a Cure
Awareness is always in fashion—and every purchase helps drive progress towards a cure for FOXG1 syndrome.
Informational Videos
2024 FOXG1 Parents Conference
How to read your FOXG1 child’s genetics report
Introducing the FOXG1 Research Center
Our CEO at the White House!
How to Create Your Own Fundraising Page
Our Reasons Why: Meet the Faces of FOXG1 syndrome