Clinical research fellow position at University of Southampton to establish and administer the Global Patient Registry, undertake research into the Natural History of PURA syndrome and publish future papers. June 2018 - The PURA Syndrome Foundation previously announced that it had awarded a research grant to the University of Southampton, in the United Kingdom. The £20,000 (approx. $26,700) grant directly fulfils a portion of the Foundation’s mission to further research into

Catching up on changes at the Foundation. A lot continues to happen, and it's about time that I catch up everyone. I'm writing today about personnel and board members: Who to contact, what roles are being filled, and what roles we are continuing to look for. As part of our bylaws, approximately 1/3 of our board members change annually in order to keep fresh energy and ideas. Each board member is asked to serve 1 or 2 or 3 year terms with the Foundation. So (with apologies f