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Registry Day is March 1, 2017!

Join the WS Community: Take part in Registry Day on March 1! The WSA hopes that you will join this effort to increase Registry membership. Registry Day celebrates the Registry, the WSA’s boldest effort to solve key medical issues in WS. The surveys used within the Registry help gather important data about Williams syndrome, which is valuable for researchers and families. Consider joining to be a part of this effort.

As part of Registry day, Registry staff will be available by phone at 617-726-5318 and 617-643-3190 from 8 a.m.-11:30 a.m. ET and 2:30-6:30.p.m. ET on March 1st to answer your individual Registry questions and provide support. We welcome feedback too!

Also as part of our efforts to get everyone involved and registered, we will host upcoming webinars, which will walk you through the process of signing up.

 

*Existing Families Webinars (i.e. families who are already Registry members):

February 23rd: 7 p.m. ET

March 1st: Noon ET

Please register for the date and time that works best for you:  https://attendee.gotowebinar.com/rt/4262055995008517633

 

Have you updated your information on the WS Registry? To help us learn how people do over time, there is a yearly survey for you to complete about your family member with WS. 

Did you know the Registry collects medical records? Reviewing medical records can help answer important research questions. 

Join us for this webinar to learn more about being an active member of the WS Registry. Registry Staff will review frequently asked questions, walk through your Homepage, and answer any questions you may have. 

After registering, you will receive a confirmation email containing information about joining the webinar.

 

         *New Families Webinars (i.e. families who have not yet joined the Registry)

           February 23rd: Noon ET

           March 1st: 7 p.m. ET

           Please register for the date and time that works best for you:  https://attendee.gotowebinar.com/rt/9082820746527385089

Interested in helping everyone learn more about WS?

The WS Registry (developed for, and owned by the WSA) collects and organizes information & medical records on people with WS. It also connects Williams syndrome families to doctors and scientists currently researching the condition. These efforts will hopefully lead to better ways of caring for persons with Williams syndrome. Join us for this webinar to learn more about this online tool for promoting research on WS! Registry Staff will provide a brief overview of the Registry, walk through the Registration process, and answer any questions you may have.

  • After registering, you will receive a confirmation email containing information about joining the webinar.
  • Visit our Registry site on WSA’s web page any time: https://williams-syndrome.org/registry-families
  • Please see the attached examples below of crucial research gathered from families who responded to the Registry’s Health Survey on the topics of thyroid issues and anesthesia.

We look forward to growing this valuable resource and offering important information to the WS community.