Support, Advocacy, Education and Community for those affected by Williams Syndrome


What is Williams Syndrome?

Williams syndrome (WS) is a rare genetic condition that is present at birth. It is caused by a spontaneous genetic deletion of a small stretch of approximately 26-28 adjacent genes on chromosome 7, including the elastin gene, and can affect anyone. It occurs equally in males and females, in all cultures and to birth parents of all ages.

WS brings medical issues that can include life-threatening cardiovascular disease, developmental delays, social challenges and learning disabilities. At the same time, those with WS exhibit striking verbal abilities, highly social personalities and an affinity for music. WS is thought to occur in approximately 1 in 10,000 births.

While accurate, this clinical description falls short of describing the vast and varied qualities that make WS individuals some of the most memorable people you’ll meet. Their highly social personality often manifests in an open-hearted approach to life, a love of meeting new people and a joyful spirit.

There are challenges too. There are health concerns to be monitored or managed at every stage of life. Early intervention, such as speech therapy, occupational therapy and physical therapy is invaluable. Learning disabilities make navigating the education system challenging.

Many with WS have difficulty with numbers, spatial relations and abstract reasoning. This can make everyday tasks harder.

In adulthood, supportive housing helps individuals with WS live to their fullest potential. Contribution to the community is made through volunteering or paid employment.