Dear PURA Families:

We are very proud to be launching the PURA syndrome Global Patient Registry!  This registry has been in the works for a couple of years, and is meant to be a repository of patient information that can be used for future studies.  It is only through your support and help that we ha...

I thought I'd remind everyone, in case you missed it, the PURA Global Registry is now started!

This is a very exciting time for all of us, and I wanted to drop a quick note to clarify how you, as a parent, can interact with the registry.

First, from our website, you will find the Registry information...

I am excited to announce that Kadidia Cooper is joining the PURA Syndrome Foundation Board of Directors!

Kadidia is joining us as our Treasure. 

Kadidia brings an international perspective to the board, having grew up in East Germany and was a young girl when the Berlin wall fell.

She has focused her c...

Dear PURA Family:

It was a wonderful time seeing you in Boston and I'm so glad that you were able to make it there.

In all, 102 people attended, representing 6 countries!

We got a lot of research updates and had some great conversations about ourselves:  How to help plan for the future, the importanc...

I am excited to announce that Todd Vaught has joined the PURA Syndrome Foundation Board of Directors.  Todd is bringing his talents as the US Vice President.

Todd has two children, the eldest of who is 25 and has PURA syndrome.  Todd brings a number of years experience in other non-profits, and he li...