PURA Syndrome Conference | June 21-23, 2024

The conference will be held at Embassy Suites by Hilton Chicago/Schaumburg

  • Hotel/conference facility with overnight accommodations and meeting areas allowing it to be easy for families to join sessions, have meals and lots of opportunities to be able to connect. All rooms have a separate living area with a pull out couch.
  • Hotel is about a 15 minute drive from Chicago O’Hare airport.
  • Hotel offers free parking but no airport shuttle
  • Schaumburg is home to many family friendly attractions including: Woodfield Mall (one of the largest shopping destinations in the United States), Legoland Discovery Center Schaumburg, Water Works Indoor Water Park, Medieval Times Dinner & Tournament and many more.
Click here to registerClick here to book a room at the conference hotel


We have a variety of activities planned for the conference including discussions, networking events and activities.


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

The conference 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!


WHAT YOU CAN DO:  Join us! If you can, please join in person. We know this is not possible for many of our families and we’ll record many of the sessions to post after the conference. We will also have a virtual option avaialable.

Send your questions! Let us know what questions you would like to ask the researchers and we will address them in the final question and answer session. Email them to [email protected].