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December 27, 2019

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March 7, 2020

It 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 years in-person PURA syndrome conference.

We know that you will all have questions about this decision. 

And we welcome them, even if we don't have concise ans...

December 27, 2019

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 for presents.  A list of places our family wants to go next year.

And ultimately, a list of things that I need to finish.  "The Late To Do list" if you w...

December 16, 2019

On behalf of the PURA Syndrome Foundation I would like to express our heartfelt Thank You to Kerry Hildring for her service to the Foundation. 

Since joining the board in January 2018, Kerry has diligently and passionately served both the Foundation and you, our families, as a Parent Liaison.  Kerry...

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...