The PURA Syndrome Foundation is pleased to announce the appointment of Amanda Shanks to Board President for the term of three years.

Exciting News! I'm glad to be able to announce to you some exciting news at the Foundation! The PURA Community has grown and changed since the start of the Foundation in 2015. Through our internal strategic planning we have realized that we need to change to keep up. We have implemented several new strategies to engage researchers and the PURA Community and we hope that you’ve noticed some of these changes so far. One change is taking place now is I am taking on a new role a