2021 PURA Syndrome Conference

June 5-12, 2021

This is a first of its kind experience for us. The virtual conference takes place over a week and consists of live and recorded sessions to allow you the opportunity to view and participate in as many sessions as possible, and at your convenience. Much will be defined in real time with live Q&A sessions and breakout opportunities. It will be active and participatory. Intimate and immersive. Safe and private. But most of all it will be inspiring, educational and transformative.

Please visit the conference web site to register!


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