by PURA Syndrome Foundation | Jun 18, 2024 | Annual Conference
Dr. Dengle Sanchez brings a unique perspective to this year’s conference with her combination of experience with PURA Syndrome from a physician’s and a parent’s perspective. We are excited to have her participating in our Clinician Q&A Panel. In-person...
by PURA Syndrome Foundation | Jun 18, 2024 | Annual Conference
Dr. Hunt co-authored several peer-reviewed articles about PURA syndrome, including one of the first two papers characterising PURA Syndrome in October 2014. He will speak at the conference about how far we’ve come over the last 10 years, as well as, join our...
by PURA Syndrome Foundation | May 18, 2024 | Annual Conference
Reminder to get your submissions in for the conference program by Monday, May 20! This is a great way to support the conference while showing off the PURA Perfect person in your life. You can include photos and a message that will be featured in the printed and online...
by PURA Syndrome Foundation | May 17, 2024 | Annual Conference
In an effort to find treatment for PURA Syndrome Peter has been developing a drug screening pipeline using C. elegans and zebrafish as disease models. The idea is to test existing FDA approved drugs for therapeutic benefits in the PURA syndrome disease context....
by PURA Syndrome Foundation | May 16, 2024 | Annual Conference
This session will be a discussion on Sudden Unexpected Death in Epilepsy (SUDEP) and reducing your risks, including the use of seizure detection devices. In-person registration: https://purasyndrome.networkforgood.com/…/65425-2024… Virtual registration:...
by PURA Syndrome Foundation | May 15, 2024 | Annual Conference
This session will focus on pediatric epilepsy, reviewing seizure types and epilepsy syndromes as a cornerstone. The talk will cover the typical diagnostic approach used by pediatric epileptologists, and will then briefly discuss some of the risks associated with...
