The KBG Syndrome Association (KBGSA) is a U.S.-based patient advocacy organization dedicated to improving the lives of individuals diagnosed with KBG Syndrome and their families. As a community founded and led by those who understand the challenges of living with a rare disease, we are committed to providing support, resources, and advocacy that truly make a difference.
 

We are driven by the belief that no one should face KBG Syndrome alone. Our mission is to advance the cause of KBG Syndrome by raising awareness, connecting researchers, and supporting families—all to improve outcomes and quality of life for those affected.

Though based in the United States, our reach is global. We support the estimated 700+ individuals diagnosed worldwide, working in close collaboration with patients, caregivers, clinicians, and researchers from around the world. Whether newly diagnosed or further along in the journey, we aim to empower every family with education, connection, and hope.
 

Our Focus Areas

• Strengthening Community: Building a global network of families and individuals affected by KBG Syndrome.

• Education & Resources: Providing clear, accessible information to patients, caregivers, and healthcare providers.

• Support for Research: Partnering with researchers to drive progress in diagnosis, treatment, and care.

• Advocacy: Fighting for better policies, medical care, and awareness for the rare disease community.

Together, we are creating a future where those affected by KBG Syndrome have the knowledge, care, and community they need to thrive.