PURA Syndrome 2021 Virtual Conference | June 5–12

At the PURA Syndrome 2021 Conference, a Zoom platform will serve as our learning and networking environment. We will create general sessions with opportunities to connect live or submit questions to researchers and presenters. Breakout rooms will provide a more intimate environment for sharing stories, ideas and building new bridges of understanding and support.

Register to Participate


We have a variety of activities planned for the week including performances by PURA families and friends, discussions, networking events and activities.


Research, therapies, advocacy, coping strategies and personal issues will be highlighted during the week. In these general sessions, parents, clinicians, researchers, therapists and other experts will speak to the important developments in their fields and provide practical advice and guidance for PURA families. We’ll explore topics including:

  • Advocacy Advice: “No” is just the beginning 
  • Genetics, Known Facts and New Insights
  • From Chaos to Connection (personal growth)
  • Getting Into Your Child’s World: Speech and Language Therapy

Please see the full schedule for details.

Networking Events (Meet Ups)

We wish we could all be together to talk about our experiences and learn from one another in a casual setting. We look forward to a time when we can share in person! In our networking events we hope you’ll enjoy your favorite beverage, and meet parents, researchers and others in our virtual pub. Join our after session meet ups like:

  • New family welcome
  • Regional connections
  • Hot topics
  • Therapies

Please see the full schedule for details.


Music, entertainment, and games are another way for families to connect during the event. Families will enjoy being part of the event and sharing their artistic talents by performing live or by video! Our schedule features:

  • Music Therapy 
  • International Trivia Slam – don’t miss this fun (and competitive) event!

Please see the full schedule for details.