Thank you for participating in our PURA Syndrome Awareness Week!
Spreading awareness about PURA Syndrome can happen all year long so please remember to:
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Tell someone about PURA Syndrome
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Help our Researchers by completing (or offer some time to a family member so they can complete) the PURA Syndrome Global Registry
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Donate to the PURA Syndrome Foundation
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Volunteer for the PURA Syndrome Foundation by contacting families@pura-syndrome.org
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.)
September
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
October
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
November
Monday, November 14, 5:00 pm (UK Time) - United Kingdom
Saturday, November 19, 11:00 am (ET) - Caring Together
December
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?
Welcome
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.
Welkom
Bienvenido
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 PURA@soton.ac.uk 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.
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
