Find Experts Near You

Healthcare providers familiar with Kabuki syndrome may be closer than you think.

Internationally and in the United States, people with Kabuki syndrome and their families schedule visits with these expert physicians to better understand and map their unique healthcare journey. Creating more centers of expertise like these is part of KSF’s strategy and mission.

Key Institutions

These institutions offer expert, multi-disciplinary patient care while simultaneously contributing greatly to research. In some cases, patients can also request to see multiple expert specialists over the course of their visit.

In-person visits to these clinics can be highly valuable learning experiences for families and can also be excellent opportunities to contribute to research at the same time.

Massachusetts, United States

Roya Kabuki Program at Boston Children’s Hospital

Maryland, United States

Kennedy Krieger Institute / Johns Hopkins Kabuki Syndrome Services

United Kingdom

Manchester Centre for Genomic Medicine

  • Address: 6th Floor, St Mary’s Hospital, Oxford Road, Manchester, M13 9WL
  • Contact: Dr. Siddharth Banka
  • Phone: +44 161 7010980
  • Visit Website

Global Experts

Kabuki syndrome experts can be found around the globe. These experienced clinicians provide diagnostic services, can recommend health screenings and therapies, and partner with families to create healthcare plans.

These providers contribute greatly to research, and we are thankful to have them as collaborators.

Oregon, United States

Randall Children’s Genetics and Metabolism

  • Address: 501 N. Graham Street, Suite 330 B, Portland, Oregon 97227
  • Contact: Dr. Drea Petersen
  • Phone: 503-944-5970
  • Visit Website

Pennsylvania, United States

Kabuki Syndrome Clinic at Children’s Hospital of Philadelphia

  • Address: 3401 Civic Center Blvd., Philadelphia, PA 19104
  • Clinical Coordinator: Tyrah Williams
  • Team Members: Julia Eisenberg, MS, LCGC, and Tomoki Nomakuchi, MD, PhD
  • Email: kabukisyndromecenter@chop.edu
  • Phone: (215)-590-2920
  • Visit Website

Tennessee, United States

St. Jude Children’s Research Hospital

Washington, United States

Seattle Children’s Hospital

  • Address: 4800 Sand Point Way NE, Seattle, WA 98105
  • Director: Dr. Anne V. Hing
  • Additional Expertise: Dr. Margaret Adam
  • Phone: 206-987-2208
  • Visit Website

France

CHU de Montpellier

Iceland

Landspitali University Hospital

Japan

Saitama Children’s Medical Center

The Netherlands

Maastricht University Medical Center, Polikliniek Klinische Genetica

Coming Soon: The KSF Care Network

The KSF Care Network is a new resource for Kabuki syndrome families to help them connect with Centers of Excellence, Kabuki Syndrome Experts, Local Care Connectors, and patient advocacy organizations. These connections will help families and individuals better understand their health journey, contribute to research, and find local support.

Through the Care Network, families around the world will be able to find experienced physicians, therapists, other professionals, and knowledgeable families who understand Kabuki syndrome, all closer to home.

You can help build this network in two important ways:

  • Become a Local Care Connector
    Local Care Connectors are caregivers and adults with Kabuki syndrome who volunteer to connect with newly diagnosed families and others in the Kabuki syndrome community. They can share local resources, provide connections, and help families feel supported from day one. 
  • Nominate a Kabuki Syndrome Expert
    Know a doctor, therapist, dentist, or other healthcare professional with experience caring for people with Kabuki syndrome? Nominate them to be considered for inclusion in the Care Network as a Kabuki Syndrome Expert.

Our Partners

As we continue to focus on activating a global collaborative research network, the Kabuki Syndrome Foundation welcomes opportunities for collaboration and partnerships, and we are always interested in expanding our network. We are grateful to our partners for collaborating with us on our strategic initiatives!

Contact KSF

Partnering Institutions

Our Collaborators

Unravel BioCureNDDGlobal Genes Advocacy AllianceBrainModel

Our Global Support Network

Learn more about Kabuki Syndrome communities across the world and see the strength of community at KabukiCount.com – our global census. 

Kabuki Count

+ Chicagoland Kabuki Syndrome Family Day (Illinois, USA)
+ All Things Kabuki (USA-based)
+ The Kabuki Gathering (Texas, USA)
+ Mid-Atlantic Kabuki Syndrome Family Gathering (Maryland, USA)
+ The Kabuki Karnival (Wisconsin, USA)
+ Pacific Northwest Kabuki Syndrome Events (Washington, USA)

+ Kabuki UK (United Kingdom)
+ Stichting Kabuki Syndroom (Netherlands)
+ ​Association du syndrome KABUKI Belgique (Belgium)
+ Sindrome Kabuki Espana (Spain)
+ Associazione Italiana Sindrome Kabuki (Italy)
+ Association Syndrome Kabuki (France)
+ The Scandinavian Kabuki Association (Scandinavia)
+ Kabuki Syndrome Support Japan
+ Supporting Aussie Kids with Kabuki Syndrome (Australia)

+ Interested in joining a virtual meeting for adults with Kabuki syndrome, hosted by an adult with Kabuki syndrome? Contact us for more information.

Hosting a new event? We’d love to hear from you!