2020 PURA Conference – Change of Plans

nIt 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.n n​​This decision has been very difficult. And it has been discussed extensively. We are...

A (late) WELCOME!

nAs it is the end of the year, I find myself going over a number if lists. n nLists 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.n nAnd ultimately, a list of things that I need to finish....

A Heartfelt Thanks to Kerry!

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. n nSince joining the board in January 2018, Kerry has diligently and passionately served both the Foundation and you, our...

Global PURA Patient Registry: A quick question?

Dear PURA Families:n n nWe 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...

Starting the PURA Registry!

I thought I’d remind everyone, in case you missed it, the PURA Global Registry is now started!n nThis 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.n nFirst, from our...

Welcome to Kadidia Cooper!

I am excited to announce that Kadidia Cooper is joining the PURA Syndrome Foundation Board of Directors!nKadidia is joining us as our Treasure. n nKadidia brings an international perspective to the board, having grew up in East Germany and was a young girl when the...

Great to see you in Boston!

n Dear PURA Family:nnnIt was a wonderful time seeing you in Boston and I’m so glad that you were able to make it there.n nIn all, 102 people attended, representing 6 countries!n nWe got a lot of research updates and had some great conversations about ourselves:...

WELCOME! To Todd Vaught!

nI 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.nTodd has two children, the eldest of who is 25 and has PURA syndrome. Todd brings a number of years experience...

2019 BOSTON Agenda!

nIn Case you missed it: Here is the 2019 Boston Conference agenda. n n n,Check it our here!n nYou will also be interested to know that the ,conference registration has been extended to the end of this week, Wednesday, June 5, so it’s not too late to join us in...

Thank you for your service!

As you may already know, we have had some recent turn over on our board. Unfortunately we have recently had to say “Thank you” for your service to both Mel Anderson and Ceciel van Hoeckel. Mel has been serving as our Medical and Research liaison since we...
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