Our ProgressOur goal is to find a therapy for Kabuki Syndrome
Bringing together the dream of Roya’s family and the dedication of the team at Boston Children’s Hospital sparked the creation of the Roya Kabuki Program. Holding the Kabuki Syndrome community at the heart of our efforts, we will make a positive impact in the lives of children and families across the world. Using a patient centered approach in the clinic, we strive to provide high-quality care to children with Kabuki Syndrome. We perform cutting edge research in the laboratory to further understand the underlying mechanisms of Kabuki Syndrome. As we integrate findings from both the clinic and the laboratory, we aim to raise awareness and education in both the medical and lay communities. Our ultimate goal is to develop specific therapies for patients with Kabuki Syndrome. This is our commitment to you, and we hope you’ll join us on this journey.
Blog
Jun. 05, 2023
Walk with us on June 11th!
Feb. 21, 2023
Rare Disease Day 2023
Dec. 05, 2022
Webinar: Considering the Road Ahead
Oct. 21, 2022
POSTPONED 10/21: The More you Know – Kabuki Syndrome Patient Registry
Sep. 29, 2022
10/21: The More you Know – Kabuki Syndrome Patient Registry
Aug. 02, 2022
Kabuki Syndrome Patient Registry
May. 26, 2022
The More you Know: Muscle Hypotonia in Kabuki Syndrome
Apr. 22, 2022
Walk with us on June 12th!
Apr. 11, 2022
05/20: The More you Know – Muscle Hypotonia in Kabuki Syndrome
Mar. 18, 2022
Roya Kabuki Program Team Update
141 participants with Kabuki syndrome enrolled from around the world
- 280
- Families in contact with Roya Kabuki Initiative
- 141
- Families Enrolled
- 382
- Total Individuals Enrolled (all KS kids, parents, siblings, etc.)
- 280
- Families in contact with Roya Kabuki Initiative
- 141
- Families Enrolled
- 382
- Total Individuals Enrolled (all KS kids, parents, siblings, etc.)
As of 12/08/2021