Parents & Caregivers

Newly Diagnosed

Support Resources

FOXG1 Patient Registry

Citizen Health Account

FOXG1 Clinical Centers

ICD-10 Code

Volunteers

Newly Diagnosed?

A baby with FOXG1 syndrome lying on a pillow, looking upwards with curiosity, wearing a beige headband and a white sleeveless top.

We want you to know two things:

You are not alone.
We are a worldwide team of FOXG1 parents dedicated to finding a cure and supporting you along this journey.
There is hope.
We are living in a time when diseases are being cured. There are new treatments being developed for conditions like ours and we are pioneering drug development for FOXG1 syndrome.

Start your Journey

Caring for Your FOXG1 Child

A man with a beard and a young boy with FOXG1 syndrome smiling, standing indoors against a light-colored wall with artwork.

Created by parents, for parents—this evolving resources guide is here to help you navigate the FOXG1 and rare disease parenting journey.

Resources

FOXG1 Clinical Centers

Young girl named Josie with FOXG1 syndrome in hospital bed with a bandage on her head, smiling and hugging a teddy bear.

Find the leading FOXG1 clinicians and clinical centers around the world.

View Clinical Centers

Help Advance Research

A young girl with shoulder-length brown hair, wearing a rainbow-striped long-sleeve shirt, smiling and looking up, standing outside near a door.

There are multiple ways to support research for all FOXG1 families.

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.

Join the FOXG1 Patient Registry

Create Your Citizen Health Account

FOXG1 Stem Cell Biobank