Registry Update: We have reached 100 registered participants however only 62 have completed all of the modules necessary. Let’s keep this going – the more participants the more we will discover about PURA!
Parents and Caregivers, the Patient Registry is so vital to our understanding of PURA Syndrome. If you’d like to hear the latest update that Dr. Hunt gave at our conference, go to: https://youtu.be/BsGjQmKq88s
Visit our website at www.purasyndrome.org/registry to get started today!
