The Williams Syndrome Association

What is Williams syndrome?

Williams syndrome (WS) is a rare, spontaneously occurring genetic syndrome that causes medical and learning challenges. WS occurs in 1 in 10,000 births without regard to sex, race, or other factors. In the United States there are approximately 30,000 people and families living with Williams syndrome

About the Williams Syndrome Association (WSA)

The WSA is the most comprehensive resource in the United State

The country's largest and most comprehensive resource for people and families living with WS, as well as doctors, researchers, and educators and is focused on three key areas: Connections, Resources, and Research. Started in 1982, WSA was the first nonprofit dedicated to providing support for individuals with WS and their families and the organization is community-led, community-focused, and community-funded. We create roadmaps to help individuals w/WS and their families navigate challenges. We serves more than 14,000 national and international members. The WSA is fully remote organization with team members from across the country. Our mailing address is 243 Broadway Suite #9188 in Newark, NJ 07104.

Organizational Values & Structure

The mission of the Williams Syndrome Association is to advance the interests of all individuals with Williams syndrome throughout their lifespan by providing programming and resources, supporting research, promoting partnerships and connections, and ensuring that the infrastructure of the organization has the capacity to lead our community toward its goals.

The WSA implements the mission by:

• Providing information and community support to individuals with Williams syndrome, their families, and the professionals who work with them
• Developing programs and services to help build strengths and meet challenges from early childhood through adulthood
• Encouraging and funding research that benefits a wide range of issues related to Williams syndrome, including a Nationwide Clinical Consortium and Research Network to further advance research and treatment opportunities.

The WSA envisions that all individuals with Williams syndrome should have the support they need throughout their lifespan to live healthy, self-directed, productive, and meaningful lives--and that in order to achieve this vision, individuals with Williams syndrome must be meaningfully included in educational, work, and community settings.

Founded by a handful of families in San Diego, CA in 1982, the WSA today is a volunteer-driven 501(c)(3) non-profit organization. The WSA supports nearly 6,000 families of individuals with WS, leveraging its paid staff with hundreds of volunteers, including the Board of Trustees, who help organize events and support families in communities nationwide. Volunteers are individuals with Williams syndrome, their family and friends, and the professionals who work with them.