Research | 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.

research

Common Symptoms of KBG

Download the new infographic here!

Colin

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.

find

a cure

Sophie

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

cure


community

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. 

Rowan

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

We all were newly diagnosed once too! It's not as horrible as it sounds but it does take some adjustments, so brace yourself for a lot of love, some frustrations but mostly, a community of people willing to help!

Build

community

  • 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

new

Research

Nathan

Diagnosed recently after almost a lifetime of unanswered questions.

Newly Diagnosed?