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KBG Groups Around the World

The KBGSA supports the estimated 800+ individuals diagnosed with this rare disease and their families. We do this by collaborating with and educating patients, caregivers and clinicians.

We are not limited to a single country but seek to aid any and all facing the challenges of our rare disease community.

Below we have listed other organizations serving the KBG Syndrome Population around the world as well as Facebook groups to help you find your local community.


KBG Syndrome Organizations around the World

Note: This is not a complete list of all possible organizations or websites, but ones our organization is aware of and recommend. 

US Based Facebook Groups

And the populations they serve

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.

International KBG Groups

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Our community is always growing.

Stop back again to see updates or learn of other events coming up!

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