This registry was created to make patients’ information easily accessible for the research community studying DDX3X Syndrome. We connect families, researchers, and support networks to help guide them through life with DDX3X Syndrome.
We support our children by loving them, advocating for them, and educating the world about DDX3X Syndrome. This registry is a large and critical component of this mission of support. Please consider registering your child. This is a patient-only registry.
Does your child have DDX3X mutation?
Frequently Asked Questions
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.
Here are a few things you can do to get involved:
- Please fill out the DDX3X Syndrome registry so we know how to reach you.
- Join our Facebook group.
- Read Recently Diagnosed With DDX3X Syndrome? and take action.
- Contact us for more information.