PURA Syndrome 2024 Conference | June 21–23



When will the conference take place?

The Conference will take place June 21-23 at the Embassy Suites by Hilton Chicago/Schaumburg in Chicago, Illinois, USA.

Who can participate?

The event 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?

Yes! Anyone with a connection to someone with PURA Syndrome is encouraged to attend.

Can my PURA or non PURA child attend the conference?

Yes! All children are welcome, please register them along with yourself. We will have an overflow room available next to the conference room.

Special Accomodations

Do you or your child have any dietary restrictions? Please contact [email protected].

How much does the conference cost and what is included in the cost?

The cost to attend the conference is $100 for anyone ages 18 and over, $50 for anyone under 18 and any PURA individuals are free. This fee includes access to all conference sessions, dinner on Friday, lunch and dinner on Saturday and lunch on Sunday. Breakfast is included for Saturday and Sunday for those staying at the Conference Hotel.

Please note: We have tried to keep costs low so that more people would be able to attend. If you are able to give more than the required fee, we encourage you to do so to help offset the conference costs.

When will registration open?

Registration for the conference is now open. Click here to register.

What is the deadline to register for the in person conference?

For those planning on attending in person, please RSVP by June 7, 2024 so we can plan accordingly. We suggest that if you are planning to stay at the Conference Hotel please make your room reservations as soon as possible as there are a limited number of rooms available at the discounted rate for the PURA Syndrome Conference.

How do I get to the Conference Hotel?

Please visit the “hotel info” link provided by the Conference Hotel.

How do I book my accommodations to stay at the Embassy Suites by Hilton Chicago/Schaumburg

The conference takes place from June 21-23, however, we have a reduced rate from Thursday through Sunday night for anyone who would like to stay longer. Please click this link to book our Conference hotel. If you have any questions, please contact Melissa Vaught at [email protected].


Will any of the sessions be virtual or live streamed?

We are working on offering a virtual option for the conference. Please stay tuned for more details. 

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. You will see a donate button to the right of your screen. All donations are tax deductible and will help support our mission.