PURA Syndrome 2022 Virtual Conference | June 10–13 & 18



Why is the Conference virtual this year?

Since COVID-19 is still a risk, our virtual conference will offer the safest way for our worldwide PURA family and friends to gather. We will gather together again in person when it is safe for all to do so. Future conferences may have a virtual component in order to maximize participation.

When will the conference take place?

The Conference will take place June 10-13 with the Final Elements Panel taking place on Saturday, June 18. All session times are listed as EST.

Who can participate?

There is a suggested donation of $25 for this event and it is open to anyone who has a connection to someone with PURA Syndrome, including (but not limited to) family, caregivers, friends, therapists, clinicians, researchers, and scientists.

Can my clinician/therapist/caretaker attend?


How much does the conference cost?

There is a suggested donation of $25. If you’d like to support the PURA Syndrome Foundation and future events, please donate by clicking here. 

When will registration open?

Registration for the conference is currently open, please RSVP by clicking here.

What is the deadline to register for the conference?

Please RSVP by June 1, 2022 in order to receive materials, links and to submit questions.

How do I join a session?

Session links and information will be emailed prior to the event. Please be sure to register for the conference to receive the email.

If I miss a session will it be recorded?

Most of our live presenter sessions will be recorded and posted to our conference website within 24 hours of the session. Those sessions that will not be recorded are noted on the schedule.

How do I submit questions ahead of time for sessions?

You may submit questions ahead of time by clicking here. We encourage using this feature to ensure the presenter has an opportunity to respond to your question.

Can I still ask questions during the live events?

Each session varies, please check the specific session listing for details.

How many people can attend each session during the conference?

There is no limit to how many people can attend general sessions, however, some of the breakout sessions may have limited capacity to allow participants the ability to interact in a more intimate setting. By registering, we’ll have the opportunity to plan multiple rooms as needed to accommodate all who want to attend.

Who do I contact if I am having technical difficulties?

Please email [email protected].

I would like to donate to the PURA Syndrome Foundation. How do I do that?

Thank you! Please click here to donate to the PURA Syndrome Foundation. All donations are tax deductible and will help support our mission.