An early start to life and a prolonged journey to diagnosis didn't dampen her spirit!
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!
Diagnosed recently after almost a lifetime of unanswered questions.
Research | Community | Cure
Download the new infographic here!
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.
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.
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.
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.
Meet the adorable Mr. Rowan; Little brother and great cuddler!
Do I have KBG?
Wondering if you or someone you love has KBG Syndrome? Learn more about the signs, symptoms and treatments.