We are excited to announce that All Things Kabuki and the National Organization for Rare Disorders (NORD) have teamed up to create the first-ever Kabuki Syndrome Patient Registry! It is now live and you can visit the site at the link above.
![](https://royakabuki.org/wp-content/uploads/2022/08/Registry-Banner.webp)
This registry allows patient families from around the world to enter data related to Kabuki syndrome into a de-identified database. The data will be used to further research on Kabuki syndrome. All Things Kabuki has set up a webpage with more information about the registry as well as an FAQ to help answer your questions.
Contact: kabuki@childrens.harvard.edu or 857-218-KBKI (5254)