“As is true for many rare genetic conditions, our ability to collect clinically relevant information that can help physicians provide excellent patient care is limited because each provider has only a small number of patients with the condition,” said Dr. Margaret Adam, Associate Professor of Pediatrics at the University of Washington Medical Center and member of the Mowat-Wilson Syndrome Foundation medical advisory board. “To further our knowledge of the breadth of MWS requires engagement of the involved community and a platform on which information can be securely and accurately entered and curated,” she said.
