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.
Why is a Registry necessary?
Though knowledge about the features, health problems, and genetic changes in people with Williams syndrome has grown steadily over the past forty years, progress in developing new therapies has lagged behind. An internet tool, like the Registry, will make it easier and faster to do research on Williams syndrome. This will hopefully lead to better ways of caring for persons with Williams syndrome.
Who Can Join?
The Registry is for families of individuals with Williams syndrome:
- 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 and being a member of the WSA does not automatically make you a member of the registry.).