‚ÄčResearch | Community | Cure

meet our families

Do I have KBG?

Wondering if you or someone you love has KBG Syndrome? Learn more about the signs, symptoms and treatments.


Mercy was a baby when they noticed this lovely little girl needed extra help.


KBG Contact Registry

Download the infographic here!

July 2018 this young lady got a new diagnosis and gained a larger family!

KBG Syndrome is a rare syndrome, with minimal research performed since it was first identified over 40 years ago. Our work with researchers, families and partner organizations is crucial to supporting the condition and finding the best possible treatment options.


a cure

Through research and community involvement, we can make the dream of a cure, a reality. The latest in genetic research points to a not too distant remedy for KBG patients. Please help us cure KBG Syndrome.

KBG Infographic


At age 10, Jude and his family found out about KBG Syndrome


With just over 500 documented cases worldwide, finding all those affected by KBG is a daunting task, but we are up for the challenge. The more people we find, the more people we can help and the more likely we are to find the cure. 

We have all been newly diagnosed at some point, whether it comes after years of searching or shortly after birth, we all want to know what to expect and where to go from here. We have created a documentwith a few tips and a list of potential specialists you may need to get to know.  Be sure to join us in the private FACEBOOK GROUP for patients, caregivers and researchers.



  • Wide eyebrows that may grow together in the middle (synophrys)

  • Prominent nasal bridge
  • long space between the nose and upper lip (philtrum)

  • for a longer list of symptoms click here



Newly Diagnosed?