The KBG syndrome Natural History Study has launched! Sign up now!

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KBG Foundation

Information Evening

The KBG Foundation and the Cerebra Network invite you to learn more about a new research opportunity for parents and caregivers of people with KBG syndrome on the Behavioural and Emotional Outcomes in Neurodevelopmental Disorders (BEOND).

Register to Attend

Research Opportunity - BEOND

About the Study

The KBG Foundation is pleased to let our families far and wide know about an opportunity which is now underway to participate in a behaviour study carried out by the Cerebra Network for Neurodevelopmental Disorders (www.cerebranetwork.com/).

Through collaboration with Dr Karen Low, a clinical geneticist on our scientific advisory board, KBG Syndrome has been chosen as a specific syndrome to be included within the BEOND study (a parent survey study looking at behavior and emotional outcomes in neurodevelopmental syndromes).

Click here to watch an informational video about the study and to learn how to participate. 

We strongly encourage our KBG families to participate. Behavior challenges are among the most frequently reported issues that people with KBG face.

Thank you to Dr. Low and the team at Cerebra Network for Neurodevelopmental Disorders.

How to enroll

Scan the QR Code or visit https://www.cerebranetwork.com/beond-kbg to enroll for online submission or contact for downloading the forms. The  survey is open until June 1, 2023. 


Estimated time to complete:  30-45 Minutes. 

Visit the BEOND KBG site

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