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Caring Child

Hey There

Have you been frustrated by the lack of information out there on KBG Syndrome? Are you wondering how to start changing the world for those diagnosed with this rare genetic condition?


Participating in research studies can be a great way to start. Or donate towards active research studies taking place right now.

Note: The KBG Syndrome Association does not collect funds directly. We collaborate with researches to support their needs. All money donated goes directly to the researcher specified below so that you know exactly where your money is going and what they plan to do with it. 


We are currently raising money to complete research towards: 

"Quantitative assessment of KBG Syndrome developmental progression over time"

This research is being performed by Dr. Gholson Lyon, M.D., Ph.D.

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 Research Studies currently enrolling

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Closes March 1st 2023

Researcher Profile: Allan BAYAT | MD, Ph.D

  "I´m a pediatric neurologist and researcher interested in rare genetic disorders such as, but not limited to, KBG syndrome. My research is mostly on describing the symptoms in children and adults with such rare disorders, understand if and why different mutations in certain genes cause different symptoms (also known as genotype-phenotype correlations) and, when possible, try to adjust the medical treatment and clinical follow-up based on the mutation (also known as personalized medicine).
At this point, we believe that all patients with KBG syndrome as well as their families and healthcare providers can benefit from knowing what symptoms adults with KBG are facing and struggling with. Since mostly children with KBG have been studied, only little is known about the natural history of the syndrome into adulthood. This is what we hope to change by collecting clinical data on adults with KBG syndrome using the present questionnaire."  

To Participate:

Fill out the questionnaire and consent below, then email it back to Dr Bayat at

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Currently Full

"I would like to participate in this KBG Research"

Thank you for furthering KBG Syndrome Research!

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