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November 25, 2019

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...

November 25, 2019

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...

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The PURA Syndrome Foundation is a registered 501(c)(3) charity organization. Information on this website is not a substitute for personal medical advice. Families should consult a medically qualified physician in all matters relating to genetic diagnosis , management, and health . Information about PURA and genetics in general is a very fast moving area and while the information on this website is regarded as the best at the time of publication , some facts may change later .