by PURA Syndrome Foundation | Aug 25, 2026 | News, Research
We are excited to announce that the new PURA Syndrome Patient Registry is now open to families! Built in partnership with COMBINEDBrain and Matrix, the PURA Syndrome Patient Registry is now open for enrollment. The registry will help researchers build a natural...
by PURA Syndrome Foundation | Dec 31, 2025 | Annual Conference, News
Register now for the PURA Syndrome Conference, an event taking place June 26-28, 2026. 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...
by PURA Syndrome Foundation | Dec 23, 2025 | News
A Look Back at 2025: Happy Holidays from the PURA Syndrome Foundation We would like to take a moment to express our gratitude and appreciation for the entire PURA community and supporters for an amazing year of collaboration and coming together to support each other...
by PURA Syndrome Foundation | Nov 7, 2025 | News
We are thrilled to celebrate our very own Celena Lozano – PURA mom, board member, and neuroscience PhD student – for winning a Summer Writing Award through the National Association of Science Writers (NASW) 2025 Perlman Virtual Mentoring Program! In her...
by PURA Syndrome Foundation | Oct 22, 2025 | News, Newsletter
Connecting Families with PURA-Experienced Clinicians One of the most common questions we hear from new families is: “How can we find doctors who are familiar with PURA Syndrome?” To help answer that, we’ve been building a Clinician Directory — a growing list of...
by Celena Lozano | Oct 22, 2025 | Networking/Outreach, News, Newsletter
Last month, our board member Celena Lozano had the opportunity to attend the COMBINEDBrain Annual Summit. This gathering included patient advocacy groups (like the PSF), researchers, and industry partners all working toward the common goal of fast-tracking treatments...
