Save the Dates!

PURA Family and Friends are invited to join us for our upcoming meet-ups. See the dates and times (with time zones) below, zoom links and more information coming soon! (Please sign-up for our newsletter below to ensure you receive our email updates.)



Saturday, September 3, 12:00 pm (ET) - United States

Thursday, September 8, 8:00 pm (Madrid Time) - France

Thursday, September 22, 7:30 pm (Germany Time) - Germany

Friday, September 23, 7:00 pm (UK Time) - United Kingdom


Saturday, October 1, 11:00 am (Colombian Time) - South America

Friday, October 7, 8:00 pm (Madrid Time) - Spain

Wednesday, October 19, 8:00 pm (UK Time) - United Kingdom


Monday, November 14, 5:00 pm (UK Time) - United Kingdom

Saturday, November 19, 11:00 am (ET) - Caring Together


Saturday, December 10, 4:00 pm (ET) - Worldwide Christmas Get-Together

Meet Our Ambassadors

As our community grows around the world, we at the PURA Foundation would like to assist in every way we can. We recently launched our Ambassador program - watch the video above to learn more!

Together we are family.

It is in coming together that we find the strength to endure the hardships, learn about the wonder of others and create a place to celebrate success. 


The PURA Syndrome Foundation is a global non-profit organisation. Our mission is to serve, educate and fund research for families coping with the effects of PURA syndrome. Foundation, families, clinicians and researchers together as one community.

Newly Diagnosed?


Newly diagnosed with PURA syndrome? 

Welcome to the Foundation homepage. We want this to be a place where you can feel supported and learn what there is to know about PURA syndrome.
Please read our welcome letter here
Learn more about the condition itself here



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Education News


Translated information on PURA syndrome

Providing global educational is one of the missions of the PURA Syndrome Foundation.​ As such, an overview of the PURA Syndrome Foundation, along with a Medical Condition Overview written by members of the PURA Syndrome Global Research Network, has been translated into a number of languages. Visit here....

Member Organisations