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This event is available to diagnosed families who have completed TBRS Community Patient Registry. The Registry is a series of surveys that ask about the quality of life, health, and developmental history of people diagnosed with TBRS. It is an invaluable tool to help us further our understanding of TBRS and advance research so we can move toward identifying treatments, improving medical care, and formulating educational supports.
At this event, Dr. Tatton-Brown will present the latest TBRS-related updates and answer questions from families. Please email [email protected] if you completed all of the surveys by February 28, 2022, but have not received an invite.
March 13, 2022, 12:00 – 1:00 pm Eastern (please convert to your local timezone)
