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Join Us For the very first
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 kbgsyndrome@gmail.com 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
Resources
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
(COMING SOON)
While there are no singular KBG Experts there are medical professionals with experience in treating individuals with KBG Syndrome.