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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. 

Newly Diagnosed

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?”

Join the KBG Syndrome
Patient Registry!

Help us bring patients, families, and researchers together to gain a better understanding of KBG Syndrome.

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On this episode of CoRDS Cast, Polly sits down with Brianna Dose with the KBG Syndrome Association. Brianna is not only a strong advocate for her community but she also has a daughter with this rare condition. While being a pediatric nurse in neurology, she was put in the exact position she needed to be to help her daughter and fight to find answers.

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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!
 

KBG Syndrome
KBG Syndrome

WHAT PEOPLE SAY

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Allison, D

The KBG Syndrome Association is the #1 place I go to when I am seeking sound, responsibly-sourced research and resources. They are committed to integrity when it comes to KBG resources for families, schools, and providers as well as connecting folks to ways to securely donate to trustworthy organizations which research KBG and work on behalf of KBG families. They have big dreams for connecting KBG families and fostering a community where they can feel safe and supported and they haven’t wasted any time making those dreams start coming true. They organized the largest North American KBG Syndrome gathering, to date. Why? Because they knew it was vital for families and researchers and, well, because they said they would - and they follow through on their promises. Gathering with this community was life-changing for our family who, until then, felt isolated and unsupported in our KBG journey - we left knowing that no KBG families fight alone. The KBG Syndrome Association also administers the Kids with KBG Facebook group, offering a supportive, safe, virtual community for KBG caregivers and the awesome humans who give KBG Syndrome a face. I love that they insist that advice given in that virtual village comes from personal experiences on the KBG journey, rather than blanket statements or guarantees as if these things are a one-size-fits-all. They also understand the difference between anecdotal Facebook polls and actual peer-reviewed research. Finally, they encourage not only supporting one another through the challenges but being sure to celebrate the joys and accomplishments along the way. The KBG Syndrome Association is a premier example of advocacy and community-building done right and I can’t wait to see all that they help our KBG community achieve!

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Cindy, M

This page is like a lifeline for the KBG community. It's full of support, understanding, and friendship. Everyone here cheers each other on, celebrating our loved ones with KBG and those who care for them. They're always finding ways to spread awareness about our community's challenges and victories. You never feel alone in your struggles here. They're all about making connections, both near and far, and providing up-to-date, factual information to help those who feel lost find a home to learn and discover more about this rare thing called KBG.

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Amanda, B

One of the things I love most about KBG Syndrome Association is their goal to change the photos on Google Images. When My daughter was first diagnosed, I obviously turned to Google where I was met with scary clinical photos, rather than smiling kids. Now when I Google KBG Syndrome, I see my own happy girl, along with other happy KBG kids. I hope someday, a scared parent after a new diagnosis can turn to Google, see my beautiful baby and other happy kids in the KBG Family and have just a little bit more peace.

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