About the 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.
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Each day will offer new and exciting opportunities for our PURA family to connect with clinicians, researchers and other parents and caregivers.

Who Should Participate

This event is open to anyone who has a connection to someone with PURA Syndrome, including family, caregivers, friends, therapists, clinicians, researchers and scientists.

Share Your Stories

Each one of us has a unique story, one that brings us to where we are today. As part of our 2021 conference,  we are collecting the moments, memories and feelings that make us part of this extraordinary community. We  invite you to share a piece of your story with us. It’s simple, and all you need is a desktop or mobile device with a camera and microphone. 

To see a sample video click here. Stories will appear on our website and may be used as part of the conference. These stories are our inspiration and our power and we thank you for participating.

The Power of Our Stories – Virtual Storytelling

Sharing Your Stories Through Performance

In addition to the sessions and networking events at the conference, we will highlight the artistic talents that may be hidden in our community. Music, dance and spoken word enrich our lives. If you or someone in your family  plays a musical instrument, dances, writes poetry or sings, we’d love to add you to the program! Performances may be live or pre-recorded through the week.

Countdown to Conference