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Join The Registry!

Join the WS Research Effort:  The WSA hopes that you will join this effort to increase Registry membership, which is part of our biggest research effort to date. 

As part of our Registry Day we held on March 1, webinars were held to walk exisiting and new users through the system. If you weren't able to participate, please view them here. 

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

Note: there is a slight delay and speaking doesn't start until about a minute in. If you add your name and e-mail and just hit "register" you should be able to view the full webinar.


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. 


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

           Link to come: 


  • Visit our Registry site on WSA’s web page any time:
  • 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.