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Thank you for participating in our PURA Syndrome Awareness Week!

Spreading awareness about PURA Syndrome can happen all year long so please remember to:

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 Holiday 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!

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



Parents - We need your help!

The PURA Syndrome Foundation Global Registry collects clinical data on PURA syndrome from affected patients globally throughout the course of their lives. 

The more of us that take the time to fill out the PURA Global Patient Registry, the more tools we will give our researchers to understand and help our PURA loved ones. Please take a moment to start the process by contacting the study team at with your contact email and the PURA study participants name, date of birth (DD/MM/YYYY), and country of residence. For more information, click 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