KBG Groups Around the World
Supporting the Global KBG Syndrome Community
The KBG Syndrome Alliance (KBGSA) supports the more than 800 individuals worldwide diagnosed with KBG Syndrome—and their families—by providing education, resources, and connection. We work in collaboration with patients, caregivers, and clinicians to improve understanding and care for this rare condition.
Our mission is global. We’re not limited by borders and are committed to supporting anyone affected by KBG Syndrome, no matter where they live.
Below, you’ll find a list of organizations and Facebook groups serving the KBG community across the world to help you connect with local support networks.
Global 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
International KBG Groups
Für Familien mit KBG-Syndrom
Zu Austausch, Informationen und Unterstützung
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Resource and Family Facebook page for Canada
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La Asociación Española Síndrome KBG es una asociación sin ánimo de lucro que se fundó en 2021 por un grupo de familias afectadas con los siguientes fines:
Our community is always growing.
Stop back again to see updates or learn of other events coming up!