Participate
PURA Syndrome Conference | June 26-28, 2026We are excited to welcome you to this year’s PURA Conference! Our conference 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.
WHAT YOU CAN DO:
- Join us! If you can, please join in person. We know this is not possible for many of our families and we’ll record many of the sessions to post after the conference. We do require that everyone register to participate so that we can ensure we accomodate the needs for all who attend. Please click the link below to register.
- Send your questions! Let us know what questions you would like to ask the researchers and we will address them in the final elements session. Email them to conference@pura-syndrome.org.
**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.
Book your room at the Conference Hotel
The conference takes place from June 26-28, 2026 however, we have a reduced rate from Thursday through Sunday for anyone who would like to stay longer. Please click this link to book our Conference hotel.
For ADA-compliant rooms or rooms with connecting doors, kindly contact the Hotel Reservations Team at: reservation@himunich.com
If participants would like to reserve a twin room, they can also contact the Hotel Reservations team at: reservation@himunich.com
If you have any questions, please contact Melissa Vaught at m.vaught@pura-syndrome.org.
As a reminder, breakfast is included in the bedroom rate (for one person if single room and for 2 persons if double room rate). From the hotel regarding cancellation and breakfast:
Cancellation is possible free of charge until 14 days prior to arrival. Full deposit has to be paid until 3 days prior to arrival. Please note, we need a valid credit card when you make your booking. First night will be charged to garuntee your reservation at the time of booking.
Breakfast is included for 1 person in the room rate. From the 2nd person onwards, we charge a surcharge of EUR 20.00 per day.
Zoom and Virtual Session Etiquette
General Information
- You may be in a “waiting room” prior to the beginning of the session. Please be patient and the host will open the meeting as soon as everything is set to go!
- During the presentations, you will be muted by the host. Please stay muted as background noise can be a distraction to other participants.
- Note that occasionally your internet may become unstable and will close your session – if this happens, click the link again to re-enter. Remember to mute!
- Just as in a live event we ask you to turn off your cell phones and be fully present in the session. If you must leave the session for a call or other need, please turn off your video.
- Position your camera properly. If you use a web camera, be sure it is in a stable position and focused at eye level, if possible. Doing so helps create a more direct sense of engagement with other participants.
- Adjust your view to “speaker” when you are participating in a general session.
- When in networking activities, you may prefer to have a “gallery” view to see who is in the room with you!
- Be sure you have your name on the screen.
- Please remember that while you are on screen, you are visible to all!
How To Ask A Question
- Some sessions will offer the opportunity to submit questions in advance. Please check the schedule for details.
- Each host will explain the process for asking questions prior to their session – formats vary and so will the way questions are managed.
- To be prepared, familiarize yourself with the “chat” feature. This allows group chats and/or may be used as a way to ask questions.
- In some sessions there will be a “hand” feature at the bottom of the screen. To ask a question, please click on the hand and you will be recognized when the speaker is ready to take questions.
- In some cases, questions may be submitted prior to the session. If this feature is available it will be noted on the website.
- Please keep questions brief and to the point.
- If you are unmuted to ask a question, be mindful of any background noise and avoid activities that could create additional noise.
- Once you have asked your question, please mute again.
- We want to be sure everyone has a chance to ask their questions and appreciate your patience during the session!
- If you have questions that were not answered during the session, please email us conference@pura-syndrome.org and we will try to resolve it for you.