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What is KBG Syndrome

KBG Syndrome is a rare genetic syndrome that can affect anyone but generally shows up in childhood. 

Learn more about how it can affect you or your child. 

Newly Diagnosed

Look—we know it can be hard to hear that you or your child has KBG Syndrome

You probably feel overwhelmed and confused. You're asking yourself, “What now?”


Everyone has questions and we are here to help!


Here we have compiled a list of frequently asked questions.

Join the KBG Kids Community

Family Weekend Social Media (10).png

We are proud to share that the very first KBG Family Weekend was a huge success. Over 150 individuals traveled from 27 states and two Canadian Provinces!

We can't wait to see you all at our next event!

KBG Syndrome
KBG Syndrome

Supporting our Families

Talk with Others

Joining a support group is a great way to discover resources, connect with other families and learn more about our rare condition.

Facebook Groups

Alone we are Rare but together we are strong. Look into resources available for Rare Disease Families. Check back often for new updates

Healthcare Specialists


While there are no singular KBG Experts there are medical professionals with experience in treating individuals with KBG Syndrome. 

> Read More
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