Network of rare epilepsy organizations that collaborate on raising awareness and research for the rare epilepsies. We are patient-focused, collaborative and working with urgency!
Rare Epilepsy Network (REN)的外部链接
US，DC，Washington
Rare Epilepsy Network (REN)转发了
Join our friends Pediatric Epilepsy Surgery Alliance and DEE-P Connections for tomorrow's webinar on the life-saving nature of epilepsy surgery with Dr. Taylor Abel. Register here to join in at 12 pm EST: https://lnkd.in/gKAw5Pdr
Rare Epilepsy Network (REN)转发了
#TeamTESS has already been so busy in 2025! ?? Here’s a glimpse into what we’ve been up to: ?? January: Amber Black, Director of Operations, attended the Rare Advocate Development Workshop, hosted by Rare Epilepsy Network (REN), Mahzi Therapeutics, and Global Genes, to learn more about drug development. ?? February: Tanya L Brown, PhD, Scientific Director, represented TESS at Pacific Northwest Research Institute's Rare Disease Day Symposium, connecting with researchers, clinicians, and advocates at Seattle Children's Research Institute. ?? March: Kimberly Lodato Nye, Founder & Executive Director, spoke at the Charles River Laboratories 2025 Cell & Gene Therapy Summit, sharing her journey leading TESS and the importance of patient-driven research. We are grateful for these opportunities to learn, connect, and raise awareness for SLC13A5 Epilepsy! #TESSResearch #SLC13A5Epilepsy #RareDisease #Epilepsy #EpilepsyAwareness
Rare Epilepsy Network (REN)转发了
March is National Brain Injury Awareness Month—a time to recognize the link between traumatic brain injuries (TBIs) and epilepsy. TBIs are a leading cause of epilepsy, but awareness, research, and support can make a difference. ?? #BrainInjuryAwareness #EpilepsyAwareness
This Friday, get to know two REN members doing amazing work for their communities on our Blog page. https://lnkd.in/gWgiQNKv. This week, the Koolen-de Vries Syndrome Foundation (https://lnkd.in/eMEbjPa) and Foundation for Angelman Syndrome Therapeutics leaders shared what they are especially proud of.
Many families with rare genetic disorders and autism have experienced catatonia, in most cases there is a prolonged diagnostic odyssey.?The rate of catatonia in ASD is about 10%, but significantly higher in rare genetic disorders (albeit small sample sizes used for those studies). In response, Autism Speaks, Autism Science Foundation, and National Council on Severe Autism have organized a 6 part series directed to families and caregivers on the basics of catatonia.?The first three have been scheduled and can be found on the flyer below.?The first meeting will include personal stories and videos of those with catatonia and how a diagnosis has impacted their lives.?Please feel free to circulate this graphic to families as an opportunity to learn more about catatonia.? This link will register you for all three meetings, people can decide which they want or don't want to attend:?https://lnkd.in/gFvtECh8
March is 31 days. But having a disability? 24/7, 365. REN is excited to kick off March with a year-round disabilities awareness campaign that reminds everyone that “We’re Here All Year.” Community, accessibility, and opportunities for people with developmental disabilities should be recognized and championed every day—not just in March.?In March, make it a point to meet people with disabilities and learn about their everyday life and why their community is a better place when they can contribute to it. Meet us, know us, involve us. #WeReHereAllYear #NACDD #DDAwareness??
Rare Epilepsy Network (REN)转发了
#RareDiseaseDay2025 Our advanced gene portals provide daily families, clinicians & scientists with expert curated clinical, functional and genetic data. Check them out: https://lnkd.in/gerse2cn https://lnkd.in/ej8_z-XT https://lnkd.in/e5___hck https://lnkd.in/gnq9UkHZ and more...
Rare Epilepsy Network (REN)转发了
You are invited to participate in this IRB-approved survey study investigating patients with epilepsy/caregivers' understanding of the term consciousness vs. awareness, facilitated by Washington University in St. Louis. This project derives from ongoing updates to the International League Against Epilepsy (ILAE) terminology. https://lnkd.in/gfu3CU89
Rare Epilepsy Network (REN)转发了
Epilepsy is a complex condition. According to the U.S. National Institute of Neurological Disorders and Stroke (NINDS), hundreds of different epilepsy syndrome (disorders that include seizures as a prominent symptom) have been identified.?So while a diagnosis of epilepsy isn't rare (65 million people live with it), many epilepsy syndromes are. For those living with a rare or unidentified epilepsy, the Rare Epilepsy Network (REN) is an important resource for information, support, and community. Visit https://lnkd.in/gGh4WpVU to learn more. #RareDiseaseDay #neurology #geneticepilepsy