The Roya Kabuki Program at Boston Children’s Hospital aims to serve the Kabuki Syndrome Community every day both in the research lab and in the clinic. On Sunday June 9, 2019, our team Kabuki Friends is heading outside and walking to support these efforts so that we may create a happier and healthier future for […]
CoRDS Cast is running a podcast with All Things Kabuki and Olaf. Hear what they have to say about Kabuki. Click here to listen.
Betsy is running the Boston Marathon with the Boston Children’s Hospital Miles for Miracles Team on April 15, 2019. While running 26.2 miles is an amazing accomplishment in itself, she also is dedicating her fundraising towards the Roya Kabuki Program’s research efforts. Betsy and her family are participants in the Roya Kabuki Program. We greatly […]
October 23 is Kabuki Awareness Day! The Roya Kabuki Team wishes the Kabuki community an extra sweet day!
Starting September 1st, 2018, the Roya Kabuki Program is able to offer virtual visits in the Roya Kabuki Telehealth Clinic. How does it work? Once a family has established care for their child with the Roya Kabuki Clinic at Boston Children’s Hospital, the family will be eligible to schedule follow-up appointments with Dr. Bodamer and/or […]
The Roya Kabuki Team spent an amazing weekend at the ATK meeting in Ohio (13-14 July 2018). Dr. Bodamer received the Elizabeth Golab Memorial Award, which is a huge honor for the Roya Kabuki Program.
We have a new consent form for the Roya Kabuki Program! We are in the process of transferring all enrollments prior to July 2018 into this new protocol. Please reach out for more information: firstname.lastname@example.org, Tel: 857-218-KBKI (5254)
Boston Children’s Hospital Eversource Walk for Kids Save the Date: Sunday, June 10, 2018 Location: DCR Hatch Shell On June 10, 2018, our team Kabuki Friends is walking to support the efforts of the Roya Kabuki Initiative, so that we may create a happier and healthier future for this wonderful community. Kabuki Kids, […]
BoLD poster at WORLD in San Diego Members of the BoLD team traveled to the 14th Annual WORLDSymposium in San Diego in February to learn about the exciting developments in the field of lysosomal storage disorders. Dr. Bodamer chaired a Satellite Symposium supported by Amicus Therapeutics on “Early treatment of lysosomal disorders: a closer […]