Practical Tools Summary
Given that Kabuki is a complex syndrome with a multitude of medical, therapeutic, and emotional/behavioral issues for the whole family, there are tools that can help keep the family organized as well as making sure that all of the needs of the individual with Kabuki Syndrome are being met. This website is an excellent tool for learning as it includes the latest research and information about the syndrome. Additionally, a downloadable brochure is a handy snapshot of the syndrome to give to therapists, providers or any other members of the "team" who may have never heard of the syndrome. The Yahoo! group is an opportunity to connect with other caregivers and individuals with Kabuki. In addition to a place for information, your own personal system of organizing will be helpful. Keeping files of all pertinent medical and educational records in a portable file or binder will help families make the most of appointments and keep track of lab results, surgery dates and other meetings.