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.

Get In Touch

Contact Us

This field is for validation purposes and should be left unchanged.

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:

Contact us  for more information.

Yes! Check out this awesome summary from Unique (rarechromo.org)


Stay Informed

This field is for validation purposes and should be left unchanged.