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Save the Dates - Upcoming Meet ups!

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.)


Friday, January 13, 7:00 pm (UK Time) - United Kingdom

Saturday, January 14, 2:00 pm (Columbia Time) - South America Registry Meet Up

Friday, January 27, 8:00 pm (Madrid Time) - Spain Registry Meet Up


Thursday, February 2, 6:00 pm (ET) - United States Registry Meet Up

Saturday, February 11, 10:00 am (UK Time) - United Kingdom

Sunday, February 19, 10:00 am - Germany


Thursday, March 16, 8:00 pm (Madrid Time) - France

Wednesday, March 22, 7:00 pm (UK Time) - United Kingdom Registry Meet Up


Thursday, April 13, 7:30 pm - Germany

Saturday, April 22, 6:00 pm (ET) - United States New Families Meet Up

Date/Time TBA - South America Music Therapy


Saturday, May 20, 2:00 pm (ET) - Caring Together

Saturday, May 27, 10:00 am (UK Time) - United Kingdom

Date/Time TBA - Spain

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

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