PURA Syndrome 2023 Conference | June 23–25



When will the conference take place?

The Conference will take place June 23-25 at the Wellcome Genome Campus in the United Kingdom.

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! 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.

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

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.

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 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.

How do I get to the Wellcome Genome Campus?

Please visit the “getting here” link provided by the Wellcome Genome Campus or use the following travel document.

How do I book my accommodations to stay at the Wellcome Genome Campus.

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


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


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. 

Will there be any COVID precautions taken?

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.

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.