by PURA Syndrome Foundation | Jun 11, 2024 | Research
Do you need help completing your PURA Patient Registry? We are excited to announce that we are now offering confidential, one-on-one appointments with our research nurse, Tessy or PURA Aunt and Retired Nurse, Lyn. They can offer assistance with navigating the modules...
by PURA Syndrome Foundation | Jun 10, 2024 | News
We are pleased to announce the release of our 2023 Annual Report! We are grateful for each of you who continue to support us in furthering our mission to drive research, raise awareness in the general community, as well as connect, educate, serve and empower families...
by PURA Syndrome Foundation | Jun 10, 2024 | Awareness, Resources
We’re excited to share that we’ve joined the Rare Epilepsy Network, a consortium of rare disorders working together on epilepsy research, advocacy and drug development.We hope this partnership will help connect our community with the latest research in...
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...
by PURA Syndrome Foundation | May 15, 2024 | Annual Conference
36 days until the 2024 PURA Syndrome Conference in Chicago!!! The conference will kick off the evening of Friday, June 21st and go to the afternoon on Sunday, June 23rd. Book your room by May 22nd to get our special conference rate. If you’ve already booked your...
by PURA Syndrome Foundation | May 14, 2024 | Annual Conference
Anna will present a comprehensive course designed to support families of individuals with PURA Syndrome in initiating and facilitating communication using Augmentative and Alternative Communication (AAC) methods. This course provides an understanding of AAC...
by PURA Syndrome Foundation | May 13, 2024 | Annual Conference
Learn about the specialty of Developmental and Behavioral Pediatrics – a scarce but important provider bridge between the medical, therapy, and educational worlds. Dr. Weedon will discuss how to partner with your providers and advocate for understanding the needs of...
