Schedule
PURA Syndrome 2026 Conference | June 2026Below is an outline of the schedule. Keep checking back for updates as they become available!
Friday, June 26, 2026
2:00-4:00 PM CEST (UTC+2)
Registration
4:00-5:30 PM CEST (UTC+2)
Welcome and Opening Session
5:30-7:00 PM CEST (UTC+2)
Evening Reception
Meet and greet reception. We’ll gather together to kick-off the 2026 Conference and have some informal ice breakers to help everyone get to know each other.
Saturday, June 27, 2026
9:00 AM -9:30 AM CEST (UTC+2)
Research Presentation
9:30 AM -10:00 AM CEST (UTC+2)
PURA Syndrome Foundation Update
Liz Astridge and Eva Tucker, PURA Syndrome Foundation Co-Presidents
Hear about the PURA Syndrome Foundation’s progress on our strategic goals; including our research focus, partnerships, and an update on the PURA registry.
10:00 AM -10:45 AM CEST (UTC+2)
Registries and Biobanks: How your data is being used
10:45 AM-11:00 AM CEST (UTC+2)
Break
12:00 PM-1:00 PM CEST (UTC+2)
Clinicians Panel
Dr. David Hunt, Dr. Marta Somorai
This is your chance to Ask Anything to doctors currently treating and managing care for people with PURA.
1:00-2:00 PM CEST (UTC+2)
Lunch
2:00 PM-2:45 PM CEST (UTC+2)
PURA Community Updates
PURA Germany, PURA Australia, PURA Poland, Jack’s Tomorrow
2:45 PM -3:45 PM CEST (UTC+2)
Research Presentations
3:45 PM-4:45 PM CEST (UTC+2)
Research Q&A Panel
This is your chance to Ask Anything directly to the people driving research on PURA Syndrome and the potential treatments for the issues associated with PURA. We want you to walk away from the conference feeling well informed on the types of research being done and treatments that are being explored, what we as a community need to do to be clinical trial ready, and the ways to get involved.
4:45 PM CEST (UTC+2)
Closing Thoughts
5:00 PM CEST (UTC+2)
PURA Dinner Reception
Sunday, June 29, 2025