Register now for the PURA Syndrome Conference, an event taking place June 21-23, 2024. Join researchers, experts and our PURA community for in-depth sessions that will focus on:

  • Research and studies about PURA
  • Parent Discussions
  • PURA Community Social Time
  • And so much more!

Registration is now open and required for all attendees.  The conference and sessions are open to family, caretakers, researchers, clinicians, and friends. For those unable to attend in person we will also offer a virtual option, and many of the sessions will be recorded to view at a later date.

Please visit the conference website at for an outline of sessions and activities, hotel booking link and additional information.

We hope to see you there!

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