What is KBG Syndrome
KBG Syndrome is a rare genetic syndrome that can affect anyone but generally shows up in childhood.
Learn more about how it can affect you or your child.
Look—we know it can be hard to hear that you or your child has KBG Syndrome
You probably feel overwhelmed and confused. You're asking yourself, “What now?”
Everyone has questions and we are here to help!
Here we have compiled a list of frequently asked questions.
We are proud to share that the very first KBG Family Weekend was a huge success. Over 150 individuals traveled from 27 states and two Canadian Provinces!
We can't wait to see you all at our next event!
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.
Alone we are Rare but together we are strong. Look into resources available for Rare Disease Families. Check back often for new updates
While there are no singular KBG Experts there are medical professionals with experience in treating individuals with KBG Syndrome.