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Williams Syndrome Association

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Nonprofit Overview

Causes: Birth Defects & Genetic Diseases, Health

Mission: The Williams Syndrome Association is a non-profit organization that strives to enrich the lives of individuals and families affected by Williams syndrome and similar conditions through support, research and education. The Williams Syndrome Association (WSA) is the most comprehensive resource for people and families living with WS as well as doctors, researchers and educators. The WSA provides the resources and referrals that families need, and a strong and supportive community with which to connect throughout that child’s life. We create a roadmap to help families navigate challenges – providing answers to common questions, a step-by-step guide, information about WS clinics across the country and best practices for age-appropriate interventions.

Results: Since its inception, the WSA has helped nearly 5,000 families of individuals with Williams syndrome.

Programs: The WSA is a volunteer driven organization. We are parents, grandparents, relatives and legal guardians of people with Williams syndrome. We know first-hand the challenges of raising and caring for an individual with special needs. Among the programs and initiatives provided by the WSA are: Family Support. Information, specialist referrals, a research library and best practice guidelines for every phase of life – from diagnosis and early intervention, to planning for life beyond school. Patient and Medical Registry. A connection between families and the research community. This is the single most valuable tool for improving understanding of Williams syndrome and discovering new ways to help children, plan research needs and distill best practices for families and doctors to use. Cutting-edge Research. Funding for initiatives at leading facilities like Yale University, Johns Hopkins University, Massachusetts General Hospital and Stanford University. National Conventions. An educational opportunity for parents and caregivers with special programs for children with WS and their siblings. International Research Symposiums. The bi-annual meeting provides a forum for scientists and doctors to discuss new research findings in Williams syndrome, plan research needs and distill best practices for families and doctors to use. Enrichment Opportunities and Scholarships for Individuals with WS. Workshops and camp programs provide life-changing enrichment experiences. Scholarships for summer and post-secondary programs enable families in need to participate. Sixteen Regions Nationwide. Volunteers host social events and other opportunities for individuals with WS and their families to connect.

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