by PURA Syndrome Foundation | Oct 10, 2024 | Awareness, News
Whether your child is school aged or beyond, there are ways to spread awareness to their community and peers about PURA Syndrome! Here are some ideas and some language to get you started: Awareness Card We have a parent willing to edit the template for parents and...
by PURA Syndrome Foundation | Oct 10, 2024 | News, Newsletter
Welcome, Nancy Boccia We welcomed Nancy Boccia to the board earlier this year! She is a familiar face as she has helped organize our PURA Conferences since 2021. We are so grateful to have her insight and contributions to the PURA Community so far. Enjoy reading her...
by PURA Syndrome Foundation | Oct 7, 2024 | News, Newsletter, Research
Patient Registry Update Parents and Caregivers – We Need Your Help to complete at least 100 Patient Registries! Dr. Hunt gave an update at our June Conference as to where we are at with our Global Patient Registry. We currently have 51 completed registries with...
by PURA Syndrome Foundation | Jul 2, 2024 | News, Together for PURA 2024-25
This October marks a monumental milestone—10 years since the first papers were published making PURA Syndrome a named condition. As we commemorate a decade of research and community, we invite you to be a part of our journey forward. Commemorating a Decade Since...
by PURA Syndrome Foundation | Jun 27, 2024 | News, Research
NEW RESEARCH A new paper was just published this week by members of our Global Research Network, Guido Rubboli and Katrine M. Johannesen and their colleagues at the University of Copenhagen, on the “differences in manifestations of epilepsy and developmental...
