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! Please let us know if you plan to bring your PURA or non PURA child and their ages while registering so that we can make necessary accomodations for them to attend.

The cost to attend the conference is $50 for anyone ages 16 and over. 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 Center.

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 $50 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 those planning on attending in person in the UK, please RSVP by June 11, 2023 so we can plan accordingly. We suggest that if you are planning to stay at the Wellcome Genome Center you 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 “getting here” link provided by the Wellcome Genome Campus or use the following travel document.

Please visit the link below and use PURA23 as the code for booking.

https://booking.hinxtonhall.org/

You may book up to 4 nights, however we do have limited availability on the Sunday, June 25 so please be sure to book as soon as possible if you plan on staying that night.

If you have any issues booking your room, please contact Hannah at hannah.anderson@wellcomeconnectingscience.org

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

Since our PURA population can be vulnerable to illnesses we ask that all necessary precautions be taken in order to keep our attendees safe. We will have masks and rapid covid tests available at the doors for anyone who may need them. While masks are not required, they are strongly suggested in public spaces.

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.