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The Roya Kabuki Program was established in 2018 to meet the unique needs of the Kabuki syndrome community. We have created a team of providers, also known as ‘Kabuki Champions’, in many specialties that children with Kabuki syndrome are typically followed by. These Kabuki Champions come together to create an interdisciplinary care team for all patients referred into the program.
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Who can benefit from the roya kabuki program?

In general, there are two different ways in which a family might utilize the Roya Kabuki Program:

1. One-time/annual Roya Kabuki Clinic Evaluation In some cases, families are looking for a formal evaluation by the Kabuki Champions as a one-time/once a year visit. This may be beneficial for any family who is interested in visiting Boston Children’s Hospital with the goal of receiving recommendations for their care team at home. Ideal for: Patients traveling from out of state/country, patients who have an established, dedicated care team close to home.

2. Establishing a medical home within the Roya Kabuki Clinic Families may also be interested in transferring most or all of their care to the Roya Kabuki Clinic. This may be beneficial for families who need to establish care within many new specialties. Ideal for: Patients within the New England region and/or who do not otherwise have an established care team

how does the roya kabuki program work?

Following a thorough medical records review, specialty visits will be scheduled depending on the unique needs of each patient. We will work with you to schedule specialties within a one-week time frame. The Roya Kabuki Program holds clinic during the 2nd and 4th Monday afternoon of each month. During an initial visit to the Roya Kabuki Program, every patient is scheduled with two core specialties, Genetics & Neuropsychology

Additional specialties might include:

  • Cardiology
  • Communication Services
  • Dentistry
  • Endocrinology
  • ENT
  • Immunology
  • Neurology
  • Nutrition
  • Ophthalmology
  • Orthopedics
  • Rheumatology

Considering the variability in symptoms related to Kabuki syndrome, we understand that your child might benefit from a specialty that is not listed above. If you have questions about an additional specialty, please let us know.

Your initial clinic visit will start and end with a visit with Dr. Olaf Bodamer in Genetics. During your exit-visit Dr. Bodamer will review and summarize the recommendations from all specialties. Dr. Bodamer will also be available to answer any questions you may have and provide a care coordination plan for your local care team.

where is the clinic located?

Boston Children’s Hospital (Main Campus) 300 Longwood Avenue Boston, MA 02115

Boston Children’s Hospital has multiple satellite locations just outside of the city. In certain cases, scheduling an appointment at a satellite location might best fit the scheduling needs of your family. You will always be made aware if you have an appointment at a satellite location, and we will assist you in finding appropriate transportation to and from the Main Campus if needed.

What is a virtual visit?

A virtual visit offers patient families the opportunity to video communicate with your healthcare provider from the comfort and convenience of your own home. You can find more information on Virtual visits at Boston Children's Hospital here.

A virtual visit is very similar to an in-person clinic visit. It will include a medical intake, review of organ systems/concerns and a virtual exam. There will be sufficient time to address all questions and implement a coordinated care plan.

If you are interested in setting up a virtual visit, we recommend:

  • Confirming with your healthcare provider that a virtual visit is appropriate to address your current medical questions and concerns
  • Checking with your health insurance provider to confirm that a virtual visit is covered under your current plan

    Virtual visits can help to limit travel to and from Boston Children's Hospital, valuable time away from school and work, and wait time for an otherwise in-person clinic visit.

  • how does follow up work?

    After your visit we will work with you to coordinate appropriate follow up care at both Boston Children's Hospital and with your local care team.

    Return patients may be eligible to schedule Virtual visits with providers in the Roya Kabuki Clinic.

    how to get more details?

    Please contact us via phone (857-218-5254) or email (kabuki@childrens.harvard.edu) to receive a Roya Kabuki Program Interest Assessment. The assessment may be completed by a parent/caregiver and/or a current health care provider. We ask that you return this form, along with recent and complete medical records. The following information, if available, will be extremely beneficial in creating your appointment schedule:

  • Interest Assessment
  • Medical Records and Imaging
  • Genetic Testing Reports
  • IEP/School Reports & Neurobehavioral Reports
  • insurance questions?

    Please be sure to contact your insurance provider prior to your visit for specific benefit and coverage information for appointments.  Some insurance plans offer travel and/or lodging reimbursement for medical visits. We have a dedicated Roya Kabuki Program social worker on team to help with identify other resources as well.

    Visit the BCH Patient Resources for resources and FAQs. You may find a list of accepted health insurances here. For any insurance/billing questions, please contact the BCH Patient Finance office at 617-355-3397.

    Additional questions?

    Please feel free to contact us via phone (857-218-5254) or email (kabuki@childrens.harvard.edu) with any additional questions. We look forward to hearing from you!

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