Global PURA Patient Registry: A quick question?
Dear PURA Families: We are very proud to be launching the PURA syndrome Global Patient Registry! This registry has been in the works for a couple of years, and is meant to be a repository of patient information that can be used for future studies. It is only through your support and help that we have gotten this far. It has taken countless hours of work and coordination by a great number of people from several countries to fulfill this dream. I believe this was one of the