Research | Community | 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.
Diagnosed recently after almost a lifetime of unanswered questions.
Do I have KBG?
Wondering if you or someone you love has KBG Syndrome? Learn more about the signs, symptoms and treatments.
Download the infographic here!
A Superhero in training with eyes on taking over the Kindergarten!
Meet the adorable Mr. Rowan; Little brother and great cuddler!
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.
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.
With just over 200 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!