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

I thought I'd remind everyone, in case you missed it, the PURA Global Registry is now started! This is a very exciting time for all of us, and I wanted to drop a quick note to clarify how you, as a parent, can interact with the registry. First, from our website, you will find the Registry information on the RESEARCH tab from the home page. You will need to send an e-mail to the Registry Study Team at: PURA@soton.ac.uk with some basic information. Once received and reviewed by