Foundation
FOXP1 Global Census
How many individuals with FOXP1 syndrome are there in the world? The answer grows every year as genetic testing becomes more widespread. This is what we know today.
Overview
FOXP1 Individuals Worldwide
The Foundation maintains a global census of every family we know about or are in contact with. It’s how we track community growth, direct resources and efforts, and — important — advocate for our community. Our strength lies in our numbers.
Diagnosed Worldwide
1,012
individuals known to the Foundation, 2026
This figure represents the number of individuals with FOXP1 syndrome known to the International FOXP1 Foundation as of 2026. The true global population is believed to be significantly larger, as many individuals with intellectual disabilities have not yet undergone advanced genetic testing.
- Every family that joins the Foundation is counted.
- Every new diagnosis matters — no matter the country.
- Data helps us advocate for research funding, clinical trials, and policy.
The rest of the story
Why the census matters
A rare disease often remains invisible until it’s counted. The census turns individual diagnoses into evidence.
Fuels Research
Researchers use census data to design studies, recruit participants, and understand how FOXP1 syndrome presents across the population.
Strengthens Advocacy
Accurate numbers help us make the case for funding, clinical trials, and policy change with clinicians, governments, and partners.
Connects Families
Many families seek to join our community shortly after receiving a diagnosis. New families come from all corners of the world, speak various languages, and are diagnosed at all ages, from newborn to senior citizen. Join the Foundation and you will find you are not alone. Everyone is welcome!
Be Counted
Add your family to the census.
If you or a family member has been diagnosed with FOXP1 syndrome and you are not yet connected with the Foundation, we encourage you to join. By signing up, you will be added to our community census — helping us build a more accurate picture of the global FOXP1 population and strengthening our ability to advocate for research funding, clinical trials, and policy change.
- Free to join — open to families, individuals, clinicians, and allies.
- Your information is kept private and never sold.
- You'll receive our monthly newsletter and community updates.
Because FOXP1 is not included in standard neurodevelopmental testing panels, many families wait years for an accurate diagnosis.
Find Your Community
Local support, in your language.
Our Ambassador Program connects families with parent volunteers in their own country, or with those who speak your language. Whether you are newly diagnosed or have been part of this community for years, an ambassador near you is ready to help when you join the Foundation.
- Ambassadors in 30+ countries across five continents.
- Support in your own language, from families who understand.
- Guidance on diagnosis, therapies, schooling, government services, and everyday life.
For example, a group of Spanish-speaking ambassadors meet regularly to share ideas for their communities and fundraising.
Get Involved