Research | Community | Cure

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Do I have KBG?

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


Common Symptoms of KBG

Download the new infographic here!


May 2017 this young man 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


An early start to life and a prolonged journey to diagnosis didn't dampen her spirit!

Do you have a KBG Diagnosis? We are looking for YOU!


Individually, we may be small, but together we are mighty! Join the research list and add your name to Call for a Cure! The more affected patients we find, the greater our chances of finding a cure. All information is private unless otherwise designated by you. 

Find your inner scientist by adding to the research

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



With less than 65 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. 


Meet the adorable Mr. Rowan; Little brother and great cuddler!

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. While we work with agencies and Doctors to put together a packet for those just diagnosed with KBG, we have created a document with a few tips and a list of potential specialist you may need to get to know. At the present, the best place to find out the most about KBG Syndrome is from the people living with it. 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




Diagnosed recently after almost a lifetime of unanswered questions.

Newly Diagnosed?