This registry* was created to serve the patient, physician, and research communities.


We support research by making information and affected families easily accessible for the organizations and individuals with the talent and resources to make a difference.

We support families by sharing experiences and guiding them through the journey of DDX3X gene mutations.

We support our children by loving them, advocating for them, and educating the world about DDX3X.

This registry is a large and critical component of this mission of support. Please consider registering your child.

* If you don’t have a child diagnosed with DDX3X mutation but would like to learn more this condition please visit Contact page.

Why Join the Registry?

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Making access to information and families easier encourages and supports research into DDX3X gene mutations.


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Research is happening right now. Events and groups are being formed. Stay in the loop!

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Everyone in our community has heard the same diagnosis you have. Learn from our experience living with and loving our DDX3X children.

Get Started

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The information is handled according to the Terms and Conditions. In short, the information is compiled together to create research friendly data for medical and genetic researchers.

Your child was just diagnosed. Here’s a few things you can do to get involved.