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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. 

After Diagnosis

It can be very overwhelming to receive a new diagnosis and to experience the range of emotions that can go with it. Explore a few of the next steps on what to expect.


Everyone has questions and we are here to help! Here we have compiled a list of frequently asked questions. If you have additional or more specific questions please let us know!

Join the KBG Kids Community

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Join Us For the very first 

KBG Syndrome Family Weekend!

The KBG Syndrome Association and Every Link Matters are proud to be hosting the Inaugural KBG Syndrome Family Weekend in Tempe Arizona in 2024. Both of our organizations share a similar mission to reach out to the KBG Syndrome Community and make a difference in their lives. 

Together we hope to create a unique experience for families to be together, meet new friends and professionals in the KBG Medical/Research community and a chance to just be themselves in a fun and safe environment...


More details to come... But mark those dates down and be ready... It's going to be amazing!

Early Registration and Event Page Click Here

If you would like to become one of our highlighted sponsors please email us at to learn more about our sponsorship levels. 

Or learn more about donating HERE


Scan Here
to donate!

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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