About
PURA Syndrome Conference | 2025Stay tuned for details!
Experience
We have a variety of activities planned for the conference including discussions, networking events and activities.
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
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].