Families and Researchers Working Together to Advance Understanding of Williams Syndrome
About the Registry
The Registry is developed for, and owned by, the WSA. It collects and organizes information that parents or legal guardians provide about their family member with Williams syndrome. It also connects persons with Williams syndrome and their families to doctors and scientists currently researching the condition. Those efforts will lead to developing better ways of caring for persons with Williams syndrome.
Why is a Registry necessary?
Information about large numbers of persons with Williams syndrome collected through an internet tool such as The Registry will make it easier and faster to conduct research on important topics and also to see how people with Willaims syndrome change over time. Though there are many Williams syndrome groups families can join and activities in which to take part, The Registry is unique; click here to learn more.
Who Can Join?
The Registry is for families of individuals with Williams syndrome:
- Through the Registry, families can improve knowledge of Williams syndrome and learn about new research opportunities.
- A parent or legal guardian joins the Registry on behalf of his/her family member with Williams syndrome.
- Any family can join (including those who are not members of the WSA: please note that being a member of the WSA does not automatically make you a member of the registry).