PURA Syndrome Virtual Conference: Together We Are Stronger
June 10-13 & 18, 2022

The 2022 PURA Syndrome Virtual Conference: Together We Are Stronger, is now taking place! Join researchers, experts and therapists for in-depth sessions that will focus on: Feeding Therapies and Nutrition, Hypotonia, Research and studies about PURA, Self Care, How to Build Your Team, Meet Ups and Parent Discussions and More!

The conference and sessions are open to family, caretakers, researchers, clinicians, and friends. Please visit the conference website at https://puraconference.org for the full list of sessions and activities and for additional information. We hope to see you there!

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