Registry
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.
Why Join The Registry
Making access to information and families easier encourages research into DDX3X mutations
Research is happening right now. Events and groups are being formed. Stay in the loop!
Everyone in our compassionate tribe of DDX3X Syndrome supports has heard the same diagnosis you have. Learn from our experience living with and loving our DDX3X children.
Get Started
FAQ
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.
Yes! Check out this awesome summary from Unique (rarechromo.org).