FAQ

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.

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

Yes! All children are welcome, please register them along with yourself. We will have an overflow room available near the conference room if anyone needs a break.

Do you or your child have any dietary restrictions? Please contact m.vaught@pura-syndrome.org.

The cost to attend the conference is $100 for anyone ages 18 and over (Early Bird Discount available for adult tickets only, see below), $50 for anyone ages 4- 17, and any children under 4 and PURA individuals are free. This fee includes access to all conference sessions, Friday evening reception, and lunch and dinner on Saturday. Please check your conference hotel reservation regarding breakfast. 

**EARLY BIRD REGISTRATION**

(Discounts apply to adult tickets only)

January 1 – Rare Disease Day (February 28): Adult tickets are only $80 – use code EARLYBIRD26 to get your discount

March 1 – April 30: Adult tickets are $90 – use code EARLYBIRD26 to get your discount

May 1 – June 28: Adult tickets are $100

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.

Registration for the conference is now open. Click here to register for in-person attendance. Click here for our virtual option.

For those planning on attending in person, please RSVP by June 12, 2026 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.

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

The conference takes place from June 26-28, 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 m.vaught@pura-syndrome.org.

All sessions will be in English with German captions on screens. If you additional language support beyond google translate, please contact conference@pura-syndrome.org.

A virtual option for the conference will be provided. Please stay tuned for more details. 

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.

We are asking our virtual participants for a $25 fee if they can pay in order to help cover the AV costs associated with providing the virtual option. If you are unable to pay, there is a free option as well. 

Virtual Registration is open and can be found here: https://givebutter.com/2026virtual

The Monday prior to the conference (June 22) so that we can be sure you receive the links to attend.

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

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

You may submit questions ahead of time by emailing them to conference@pura-syndrome.org and indicating what speaker you are requesting answer your question. We encourage using this feature to ensure the presenter has an opportunity to respond to your question.

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

Please email conference@pura-syndrome.org.

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