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FOXP1 Data
Collection Program

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Participating in a data collection program is one of the most important things that families of a child with a FOXP1 genetic disorder can do.

Having a robust database will enable the International FOXP1 Foundation (IFF) to generate more interest from clinicians, researchers and drug developers to research, test, and develop drugs, therapies, and a FOXP1 natural history study.


The FOXP1 community is partnering with RARE-X [a 501(c)(3) nonprofit] to build a Data Collection Program for our families. When you participate in the FOXP1 Data Collection process, you will help accelerate research, therapy and drug development, as well increasing the FOXP1 knowledge base. 


The FOXP1 genetic disorder Data Collection Program will be patient-owned but enabled by RARE-X technology. All data governance, consent support, and data security will be put in place by RARE-X.  FOXP1 families will benefit from a streamlined process for collecting research-ready data in a phased approach.

We are all pioneers in the field of FOXP1 genetic research

Enroll in the

FOXP1 Data Collection Program

Hosted by RARE-X