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The WS Registry

Families and Researchers Working Together to Find Answers       

When it comes to Williams syndrome, we are all looking for answers.  One of the best ways we have for increasing the number of researchers looking for those answers is a robust Registry, and the only way to strengthen our Registry is through your participation.  My hope is that every family will join the WS Registry.  With every new participant, the Registry gets stronger and so do the chances for a bright and healthy future for our sons and daughters with Williams syndrome. -Terry Monkaba 

   

About the Registry

The WS Registry is developed for, and owned by, the WSA. It is directed by one of the world’s leading experts on Williams syndrome – Dr. Barbara Pober, a medical geneticist and Harvard professor.  The WS Registry 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?

Williams syndrome is rare.  Not enough information exists about it to quickly develop new therapies.  However, you can help change that. A registry is a database of stored information and health updates about a particular condition.  The WS Registry takes it a step further by being a very dynamic database!  It collects new information from you every year and connects you with important new research opportunities. Adding your family member’s information into the WS Registry makes it easier and faster to do research on Williams syndrome.  This will hopefully lead to better ways of caring for people with Williams syndrome.

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).

Contact information for questions:

Jessica Waxler: 617-726- 5318 or WSRegistry@partners.org

Learn More

See additional information about the WS Registry.

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Need to start a new survey? Share medical records? Check back in with the WS Registry!