The addition of a Parent Advisory Board within the Roya Kabuki Program is meant to provide invaluable guidance to our patient centered focus within the program. The Parent Advisory Board is an integral part of the Roya Kabuki Program to represent the needs of the Kabuki syndrome patient community. Board members will advise on clinical, social and educational aspects of the Program and liaise with patient networks in the United States.

With everyone's help, we will have a positive impact on patient care and patient quality of life.