We are excited to announce that All Things Kabuki and the National Organization for Rare Disease (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.
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: firstname.lastname@example.org or 857-218-KBKI (5254)