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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.

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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.

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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

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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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