2023 PURA Syndrome Conference

June 23, 2023 @ 9:00AM — June 25, 2023 @ 9:00AM Eastern Time (US & Canada)

Hinxton Hall, Wellcome Genome Center: Wellcome Trust Genome Campus Hinxton Hall Hinxton , UK CB10 1RQ Get Directions

2023 PURA Syndrome Conference image

PURA Conference 2023: Forward Together Again

Let’s Get together! We’ve missed seeing you! This June we take a giant leap forward and assemble old friends, newly diagnosed families, researchers, clinicians and others for a 2 day interactive and immersive conference in the U.K.


The conference will be held at Hinxton Hall Conference Centre, an exceptional conference and meeting facility at the heart of life-changing science in South Cambridgeshire and site of the PURA Syndrome Conference in 2018.

The Conference Centre offers overnight accommodation for families making it easy to join sessions, meals and provides lots of opportunities to connect.

The price of the conference 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 Hinton Hall Conference Center.

For the most updated information on the conference, please visit www.puraconference.org.

Forward Together Again Program

RESEARCH: The conference will be packed with sessions focusing on current research and information vital to PURA families. Researchers and clinicians are expected to attend in person, and it is an opportunity for parents to meet these extraordinary people – and to have the researchers meet the parents and our extraordinary children. Expect to learn, question and engage with the presenters in the formal sessions and socially at the end of the day.

LEARNING FROM OTHERS: After being apart for several years, this is an important time to connect as parents, siblings, and caretakers. These connections strengthen us and provide a way to share and learn from others in our PURA family. Parents and caregivers will participate in panel discussions and 1:1 conversation that get to the heart of issues families face every day. We’ll also have time to just talk and meet new friends!

FULL AGENDA COMING SOON: Check-in begins Friday at 2pm, with a meet and greet starting at 4pm, and welcome dinner at 7pm. There will be a full day of sessions on Saturday, including our research sessions. The conference will continue into Sunday with sessions in the morning and close at 2pm after lunch. The complete agenda is coming soon.

If you can't join in person, please join us virtually by registering here.

Support us with a donation.