Contact Us
For researchers and general inquiries, please email [email protected].
For parents/family members/caregivers, please meet Kate Tambone. Kate is our Director Community Outreach. Kate is available to parents to answer any questions, connect you with other families, and share valuable insights.

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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)