Global Patient Registry

PURA Syndrome
Global Patient Registry – COMING SOON!

About the PURA Syndrome
Global Patient Registry

Working in collaboration with families, clinicians and researchers, this project proposes to collect clinical data on PURA syndrome, from affected patients globally throughout the course of their lives. This should enable researchers to define the full spectrum of the disorder, and also characterise the natural history (what happens across age and life) for PURA syndrome.