Registry UpdateDear PURA community: I hope you are all healthy and this finds you well. I am sure that we are all standing resilient and vigilantly...
2020 PURA Conference - Change of PlansIt is our sad duty to inform you, our families and our community, that we as a board have taken the unfortunate decision to suspend this...
A (late) WELCOME!As it is the end of the year, I find myself going over a number if lists. Lists of what I did this past year. A list of Thank You cards...
A Heartfelt Thanks to Kerry!On behalf of the PURA Syndrome Foundation I would like to express our heartfelt Thank You to Kerry Hildring for her service to the...
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...
