BALTIMORE, Maryland, May 31, 2022 - Dr. Gholson Lyon to host the second Summit for KBG Syndrome
On June 7, 2022, Dr. Gholson Lyon, a member of the KBG Foundation Scientific Advisory Board, will host his second online summit for clinicians and researchers to develop care protocols and treatment guidelines for people with KBG Syndrome, a rare genetic disorder.
In March 2022, Lyon held the first-ever summit that brought together physicians and researchers to talk about the multi-faceted ways people with KBG Syndrome need coordinated care among numerous specialties.
“I was encouraged by the first summit, and there is definitely a desire for doctors to learn more to help their patients,” Lyon said. “The more the research and clinical communities collaborate, the better the outcomes will be for people living with KBG Syndrome.” Researchers and clinicians interested in participating can register by emailing Lyon directly at gholsonjlyon@gmail.com.
KBG Syndrome is a rare genetic disorder caused by a mutation on the ANKRD11 gene, associated with a spectrum of challenges, including developmental delays, cognitive disabilities, behavioral disorders, autism, seizures, hearing loss, skeletal anomalies, heart complications and gastrointestinal problems. There is no single cure, and patients require coordinated care among numerous specialists: cardiologists, endocrinologists, otolaryngologists (ENT), psychiatrists, neurologists, gastroenterologists, psycho- or behavioral therapists and more.
The KBG Foundation sponsors a Facebook page, KBG Professionals Group, which allows clinicians and researchers to pose questions or share information, and the Foundation's site administrators can serve as a conduit to patients for them.
ABOUT GHOLSON LYON
Dr. Lyon is a psychiatrist and lab head at the Institute for Basic Research in Development Disabilities and a professor at the Graduate Center, City University of New York. His paper, KBG Syndrome: Prospective Videoconferencing and Use of AI-driven Facial Phenotyping in 25 New Patients, was published in November 2021.
ABOUT THE KBG FOUNDATION
The KBG Foundation is a 501(c)(3) nonprofit organization, dedicated to providing support, assisting in research programs and advocating to raise awareness about KBG Syndrome. Learn more at kbgfoundation.com.
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